December 21, 2017 OPC and Clinic Visit and Labs

Cole took Kevin to this visit because I was sick! Since we most likely gave Kevin what he got to be hospitalized this time I did not come out of my room and didn’t want to be in the car with Kevin driving an hour down and an hour back! So Cole took him and it’s already January 17th as I’m updating this page and have no memory of what they said Debbie said other than things look great and labs next week! I know when I saw the labs later in the portal and hollered them out Cole said something like that’s what the clinic visit sounded like! WBC is this Tac level is this LFTs are this…he has like the same 5 labs drawn so some of us get use to those numbers. I was so thankful Cole could do this for Kevin! and me!

December 14, 2017 OPC (HMH Outpatient Clinic) Clinic Visit and Labs

This was Kevin’s first visit after hospitalized last week for neutropenia. (low white count plus fever) We saw the new coordinator Debbie and a female surgeon or “provider” who was in the clinic.  She changed his aspirin to a coated one, refilled his ergo vitamin he takes every Saturday, made his “tent” treatments for the year once a month, and has him on prednisone since he is off cellcept. He’s off bactrim and the tent treatments replace this.  HIs WBC was great. I think she said a 5. He is NOT anemic and she said don’t let anyone tell us he is but they make it look like he is with all the meds. His prograf level was 7.3 We asked about sailing. Sand is ok but she doesn’t want him in the OCEAN! He can travel but for the first year be careful and check with them. He can get in a pool now just not the ocean water because of all the bacteria. Keith’s sailing trip with the boys will have to be postponed for at least a year. She wants him walking 20 minutes a day with no core. She said pretend you don’t have a core because if you use it you could get an incisional hernia and that would look like an alien baby on the scar line:)

Admitted to Houston Methodist Dec 2- 6, 2017 for fever of 102 and low white count

*** the iphone blog app hasn’t worked for me for two weeks. I’ve been keeping notes and will try to use my pc to upload them. Kind of afraid of that site on the PC because I’ve pretty much only done the app. It already said “there’s an easier page editor. Switch now!” So do I click it and hope it all stays! Oh if i were truly a blogger! Cole can’t get home soon enough for semester break!

December 6, 2017 The Much Much Better Morning!

I sent this quick update to our church prayer chain:

The nurse just gave us a report. The white count did go up this morning! It’s a 1.1 from .7!!!! (Crazy to be excited about a high still low white count!) He is having no pain right now! They were allowed to give tramadol with Benadryl and that helped! Ruth Stayte (from Florida)  actually texted me about the antihistamine tip and I showed the nurse and she asked the doctor and he said yes! Praise Him for Great timing and wonderful guidance!!! Waiting to hear from the team if he stays or goes home today. Thank you for your prayers and concern for us!!! Pastor sent us this verse and it’s perfect:

Isaiah 38:5b, “…Thus saith the LORD, the God…I have heard thy prayer, I have seen thy tears…”.

Very thankful!

9:30 Dr. Saharia said Kevin needs one more shot today and then can be released to go home! He said he just needs to be home! Especially now that all those tests have been seen and are negative…everything is ruled out that they were concerned with. He does have that parainfluenza and is really recovering fine.  Hardly any symptoms just those side effects from the shots. Recovery Chair here he comes!

December 5, 2017 The Horrible. Terrible.  Awful Evening!

So far the nurse mentioned in way as a bummer that his wbc was even lower than two days ago. They are .73 yesterday .9 Sunday .8. This was earlier like around 8 am. I got ready. Used my wipes to clean the surfaces of the room and leave a nice citrus smell. And it’s like 10 and up until this very point only a box of masks was on the outside ledge of the door and a hand written sign that said wear a mask for neutropenic conditions. Just now. Someone opened the door to “hang” what I know is that next level thing which holds gowns and masks and gloves. Nothing said to me. Just an attendant. Maybe I should peek out there.

At 6 ish the nurse gave Tylenol for 99.8

I only know fever part  from the front door report given to us between nurses at shift change and because we were awake! I kind of looked over at Kevin because it was a shock to me. I mean he was awake and looking at his phone. But I missed that dose and am in the room! Lol! Must have been sleeping good … and the door drama was just that. Drama. The actual door hanger was finally delivered from the other day so no more make shift signs and boxes. It’s an organized box holder that the container store would marvel at.

The NP Kimberly came in. He can’t go home. They think and are checking for a possible secondary cause along with parainfluenza. She said it could be cmv but they aren’t sure. Waiting on that result. It takes a few days. So. Kev was + for cmv and donor was too and I asked once he’s had it can he get it again. She said yes. But who knows. For now. Stay put. And it’s critical to the young and transplant patients. Like we are where we need to be. It’s good that he isn’t out and not realizing he has this because it seems to me that the symptoms can kind of go unnoticed until it reaches a critical point. They explained it like how you can get mono (ebv) and not know you even ever had it. Also I’m reminded of our hospital cycle. It starts out all hype and what!?! Then finally settles down. So I’m not jumping or nearing the edge over what could this be. Because we are right where we need to be for whatever it decides to be. Pep talking myself!

Around 4 he was trying to nap and he just couldn’t. His bones were hurting. So the nurse gave Tylenol. He’s just been quiet today. He watched PSG get beat:( That could cause bone ache but also those shots to help boost white counts. He had his third one today.

Samantha NP from Dr. Galati stopped in but I missed her because I was down delivering our dirty laundry to Tiff & Bailey “drive by all things needed at our service!” Babies can’t be on this floor. No one probably would want to be so drive by is the way to go. Good thing she’s in midtown!

They tented Kevin for a Pentamidine Treatment. I asked the tech all kinds of questions and really wasn’t completely satisfied with his responses. He said Kevin had this before. I asked when? And he just didn’t answer. But I had to leave so I went ahead and grabbed dinner in the cafeteria. I could have cried down there and was close but got some perfectly timed texts and verses and closed the google window I had opened. (!) The new coordinator yesterday said DONT USE DR GOOGLE WEB MD NONE OF THOSE! Lol! She said email her anytime.

I got back up to the floor and asked who ordered it and what is it used for to our nurse:) (Tabitha) And the nurse just explained it really well! Then confirmed it with her charge nurse. Liver team ordered it. So they had to stop the antifungal meds (Valcyte) cause those make his counts low. But they want the effects of those without making the counts low so this tent thing is once a month treatment! And fights preventatively stuff like pneumonia etc  Light. Bulb. Whew. And I’m pretty sure Debbie mentioned this in the whirlwind green binder talk yesterday but new words don’t stick. And when she said inhaler I imagined an albuterol hand held one. Not the bubble boy tent!

The entire rest of the day was what I call stress on a stick or absolutely horrible. Terrible. Awful. But by 11 pm we both went to bed! Basically his body was twitching from pain from those neupogen shots to increase wbc. Add flu and you just don’t know what is the culprit. Dismiss and say he’s achy from flu but as he asked me to massage his back he just was warm to the touch plus could not find a comfortable position. And absolute real sharp pounding bone wrenching pain.  He was suffering silently. Before shift change the nurse did give him Tylenol to try to help with it and after shift change it just heightened. We did get the same nurse from the night before so she knew us a little. Kevin did let me go find her to ask her to call for something. And it was early enough that we wouldn’t be waking any NP or doctors. I say early it was 8 to 9 ish. The NP she called wasn’t comfortable ordering anything because of how newly transplanted he is. Everything we knew before transplant is off the list kind of for pain management. And in my head I don’t even think I was wanting pain meds for him just wanted to let them know what was happening and is this normal and what could help. I’m thinking chicken noodle soup treatments! But he didn’t even eat his dinner. One bite was all. It was bad. I knew all day he just wasn’t himself and it just got worse. So there was a moment when I’m praying and crying in the corner and the nurse walked in and gave me a hug! I told her she just caught me at a bad time. And hey! It’s all happening to Kevin! She kept us informed every step of the way. She was texting and calling the doctor. Finally she reached him. He was in the operating room. But he took the call. God’s beautiful timing to because I was reaching out to Ruth and she had just sent this text “What about this? “Neupogen helps the body make more white blood cells by stimulating the immune system, which also creates histamines. So your doctor also may recommend an antihistamine such as Claritin (chemical name: loratadine) – NOT Claritin-D – to ease bone pain caused by Neupogen.” And the nurse was able to ask the doctor if along with pain med could he take an antihistamine. And he did! So Kevin was given tramadol then Benadryl and we dropped in bed. In the middle of this wonderful Rebekah Pool had Tiff’s treats delivered! How sweet was that timing! So we stress ate cookies waiting for the orders. And by we I mean me. But there were enough to share so we could offer them to the staff as they came through with updates! It was the sweetest worst time ever! Lol!

I sent this prayer request to the church prayer ladies and to our pastors:

Prayer Request for Kevin Troutman.

He’s been in Methodist Hospital since Saturday. Fever and “parainfluenza” are the official diagnosis with a very low white blood cell count. The shots they gave over the last three days to help increase the counts are now affecting him. He is in pain and not really eating well, and we are asking for prayer over his entire body that everything would settle down. Praisefully he isn’t showing signs of rejection but because of the delicate low counts he is isolated and being treated with great caution. And in pain:(

These verses came to my heart  to intercede for Kevin. Please ask for His guidance and way since we don’t know what to do.

“I will instruct thee and teach thee in the way which thou shalt go: I will guide thee with mine eye.” Psalms 32:8

“O our God, wilt thou not judge them? for we have no might against this great company that cometh against us; neither know we what to do: but our eyes are upon thee.”

2 Chronicles 20:12

God Bless You and Thank You,

Beth & Keith

I am writing this at 6:30 am Wednesday and we both slept straight through the night! Very much praising the Lord for Great sleep and great Care over Kevin! His timing is perfect. Poor Grant tried to deliver our clean clothes downstairs after his basketball playing Tuesday night and I cried to him saying it just wasn’t a good time to leave. Kevin looked at me like go but I couldn’t. And sure enough the text from Ruth came right after and then the nurse walked in and I was reading it to her and she even had to read it herself! He kept me in the room to show that. He guided and showed us the way exactly like we asked!

Also in all of this crazy the portal updates every night for us with the day’s tests that are back. And the cmv and ebv test returns populated the portal. So in all the crazy I asked the nurse to see if it meant nothing detected like it said or was there another report they are waiting for. She said after checking later it looked legit! Can’t wait to ask the team this later. To me that means no cmv or ebv going on. Will wait for absolute doctor official though!

Dec 4, 2017 Monday

Kevin ran a fever last night. So we will see what the numbers look like. He does have a sore throat but is up eating breakfast. I walked down to the Starbucks in the lobby because it’s open later today and got him so good hot tea!

Dr. Saharia popped in. (I said hi from my dad to him!) His white count went from .8 to .99 so another neupogean  shot today and one tomorrow. |operative word there: tomorrow| bummer… he did run fever last night so we didn’t have the highest of hopes. He’s showering. Ate breakfast. Little sore throat. They aren’t worried about anything but the counts.

We met a new coordinator. She hopped in. Educated us with a new Methodist Binder. She is the post Liver coordinator. He will have labs on Mondays at Woodlands Methodist and labs and clinic visit on Thursday’s at Fannin Methodist. It was a whirlwind but very informative. Very similar information compared to Ochsner. I already read the entire notebook. I told Kevin he could next. I was waiting to hear his classic two year old reply: “I said no mama!” Can you believe he lived to this day telling me that! Lol! We quote it all the time. If anyone can get away with it it would be Kev! Cute enough to stop strangers in their tracks when he displayed his poochy lip! Anyway. Tiffany brought dinner to the lobby! Great escape! I got a break from wearing the mask and Kevin got to wear one! We are loving the transplant floor. Each person who walks in that door is just born to bless. Goodness are they called for what they do! I know I didn’t think I could enter a hospital again and I wanted to be done and then I get here and see how well they treat Kevin and see how well he takes everything and how much right now he needs this place, and I am right back to making the most of it and completely thankful!

Dec 3, 2017 Sunday

Dr. Galati and Samantha NP rotated through. He called me out. Said I needed a mask on! Ultrasound looked good. The white count is low and could be from this Virus or from the medications. Dr. Saharia wants cellcept stopped. Ruling out other infections and watching cultures. If all looks good white count wise he’s for Kevin recovering at home as long as he eats and drinks plenty of fluids. So as early as tomorrow.

No Visitors he’s neutropenic which means his white count is even lower that it was yesterday and that was low.

He ran fever last night.

NP for transplants was just in. Janine Hyden. She gave me her card.  She was great. Informative! She said we will get a post transplant coordinator. Also gave me the number for after hours.

713-441-5451

Bummer is his white count is lower. It’s .8 so no visitors.

Checking for cmv and evb because of low count. And holding cellcept and Valcyte and Bactrim.

Neutropenic so gowns and masks on those coming in. Mask on us if we go in the hall

Doppler looked good. So ultrasound from yesterday was fine. Need to 100% ask one of the doctors if the flow looked good.

Kevin asked to shower so that’s a good sign.

They drew more blood to test for cmv and Evb

***My app for my blog hasn’t worked for two weeks now! Cole checked it on the pc and it’s fine only I didn’t grab mine. He said give it a few weeks for them to get the bugs out of the latest update. The blog app going down was perfect timing. At least I got to update the most important part of transplant!

Dec 2, 2017 Saturday 

10:30 pm 99.7 and freezing Even though the room was hot. So he’s creeping up again on the temp. He also has a headache. Only Tylenol since the ordered aren’t in. I’ve rubbed his head several times. Poor guy. Nurse also hung zosyn antibiotic. Earlier a second antibiotic was ordered and the NP said that Dr. Galati shot that one down.

7:00 in Dunn 409 no meds ordered but I brought Home meds and the nurse said the orders were to take home meds but only prograff. Glad I brought them:) I asked about that later now that he’s post transplant so we bring Home meds with us and basically she said no but it’s what they did today.

6:00 I asked for food for Kevin. Keith said something about a tray being ordered. He’s had no food and is finally hungry. Waiting on transport so by the time he gets to his room the service will be closed. The nurse came in and we couldn’t understand her. I said two hours ago they said they could order him a tray. She said she could get him a sandwich. So we were like yes. Bring food.

5:00 The NP and pharmacist came through. NP was from infectious disease I think. They were screening for sepsis. Tiff says all the hospitals check for that. The pharmacist went over meds. We had the blue card which makes that so easy.

4:00 Me and Cal made it with packed bags. All the info is from text messages from Keith! He did good.

3:45 Kev just went to ultrasound.  I am waiting in room

3:30 Bro. Pope just left

3:00 Galati just came back:

-Will admit under transplant surgeon Saharia(sp?)

-He is on call this weekend

-He and Samantha will be by later

-Blood work not out of ordinary

-White blood count a little low, but could just be meds

-I told him that will not be a good enough answer for you… he said just chalk it up to high fever something….:)

2:30 Dr. Galati just came in :). He is checking labs now

1:15 Chest X-ray… of course… following protocol 🙂

Or just paying out the machine 🙂

1:00 They got him in an evaluation room now… looks like they fast tracked him ahead of all the others, even a chest pain lady…We are in ER exam room #41

12:30 checked in with triage and waiting

11:30 Keith spoke with on call coordinator and that guy said get to the ER. BTW the temp to call with is 100.4. Anything over that they want to know.

10:00 am 100.4 Keith searched the house for the transplant notebook from last year! We have all things Ochsner and all things Galati here but no after hours call number. I told him what quadrant of the house to look in and it’s called no man’s land. In the study. He found a couple of binders! One had Houston Methodist Transplant Center and he made the call. And asked for the on call coordinator to call him back.

8:30am Fever 99.5 not feeling well. Ate half a piece of toast. Took meds. Went to bed last night with fioricet headache meds.

Nov 30, 2017 Thursday

spoke with Dr. Galati.  He would like to increase the Cellcept to 1000 mg AM and 1000mg PM.  Do you need a new prescription, or double up on the meds you have?

Labs all look good!

November 15, 2017

Dr. Galati & Jane This is the first Houston visit

We found out Jane will still be our coordinator in Houston! We had a great visit. Jane cried at least twice seeing Kevin! Dr. Galati examined Kevin and asked questions that didn’t require “good” from Kevin! I didn’t record this one so I’m going on memory and my notes. Not to mention how many times I’ve tried to update and my blog page is being so persnickety.

About the stent he thinks it’s a good idea to keep the follow up appointment with the Ochsner doctor who performed it all the while pouting out how important the hepatic artery is. It’s the life blood to the liver! If flow isn’t good he could get schlerosing cholangitis. And not the kind he just battled. He said he got that the good old fashioned way: primary schlerosing cholangitis. But secondary schlerosing cholangitis from low flow through that artery and in turn the liver and that is all I’m writing here. Never want to think about that again! The images didn’t actually come so he couldn’t see what we thought we were picking up the day we grabbed medical records. If he could have seen how open it is maybe he wouldn’t have looked so concerned… No wonder it only took 15 minutes to get those before we left New Orleans. I don’t think anything much “film” wise was on there. But Jane said she would get them! She said she is tight with Ochsner now! She’s so wonderful! We are so thankful for this team! He was ready to send Kevin that moment for an ultrasound. But he will get one in the next month to set a baseline.

Labs in two weeks.

Dr. Galati gave Kevin a routine to work up to and encouraged exercise like walking 30 minutes two times a day. In a month or so he can add weights to the walk like small hand ones. Then lead up to a ten pound one in a back pack to walk with. He called it something like a slow roll out of the two year sick crawl. He wants him to take his time.

We mentioned the back left side pain Kevin was having and it didn’t hardly register with him. He chalked it up to recovery stuff. My words. He saw the blue card to see his medications and when he saw the pain med listed he said don’t take that! He said start with Tylenol. Kevin hasn’t had pain in weeks except for those “growing” pains from all things settling down in there. Most people I read after said it felt like a bomb went off inside and scar tissues would just pop and adjust as they stretched and got more mobile. Keith told me not to google it. But I did. I had to know what they Transplant community said about back left side pain. We also had him out of his routine. Packing. Moving.  The drive back to Houston!

Keith is wanting to plan a trip for the boys for the end of May and Jane said as long as Kevin is doing well to go for it!

Thursday November 9, 2017

2 months and 3 days since transplant. 

3 months and 16 days since we left Houston. 

We were officially released today from Ochsner to HMH! (Houston Methodist Hospital) The day we’ve waited for is today! And I woke up thinking now how can I ask what I already asked on Monday without saying the same thing: so when are we released? What has to happen before we are released? What’s the timeline here? So today I sent a note in the portal with this: what is next? We had labs twice this week and an appointment in Houston for Wednesday that I can cancel if needed. And I got a call from Nancy!!! She said Dr. Tyson was just waiting to speak to Dr. Galati. And that she has called all week. I said I can call and let someone know if that would help?:) We basically put out an APB on that guy. Dr. Tyson even left her cell phone for him to call on. Whew! (Now if I could only know what they said!)

Keith, Cole and Caleigh were trying to decide if they were coming this weekend. Caleigh is done with marching band so no more leaving Houston at 7 pm for a 6 hour drive! Keith said they would come either way. So that was the best. I think I needed to hear that! We’ve had the best trickle of company, calls, texts, cards, packages, and have lived for each moment! It’s filled our days! When Nancy called and said that the two doctors have spoken and we are free I was like well what do we do? Do we need y’all to sign something!?! She explained how to get the “films” and then said she was off tomorrow but she can be reached always in the portal!

Keith and I had already been talking and I called him first because Kevin had fallen asleep after morning meds and when he answered I couldn’t even get the words out. He went straight to what is wrong and thought something terrible had happened. No. The complete opposite. Something Wonderful Has Happened! I cried and cried through telling him that we are released. The BEST was telling Kevin! I was a new creature by then! You can guess the look on his face: gentle quiet yet priceless expression of perhaps Christmas morning anticipation. Happy. He was up and showered and we were out the door for medical records!

I cannot even begin to tell you the simplification of the film retrieval. I was thinking back too much on that medical records floor in Scurlock tower and let fear and trepidation take over me! There was a bad lady in there one time. I’m sure I blogged about it! We went up to the second floor at Ochsner and into the waiting room and there was a phone on the wall. You pick it up. It rings the records. They get your name and info. Then she said there is a clip board with Medical release to fill out and she would be out in 15 minutes! We were willing to come back tomorrow because Kevin left his wallet. She asked if I was his mom. I said yes but he’s twenty. She said that’s fine! She would have me sign the release. We barely had time to buy TShirts! Oh yes. We ain’t leaving this place without the T-SHIRT!

We bought Great TShirts: “Donate Dat” “Donate Life It’s Always in Season” “Transplant Dat” “Team Ochsner” We went back up to the second floor and in no time a lady came out with our cd.

And that was it.

It was wonderful and emotional all wrapped up together. I mean. How do you just walk away from the place that gave us through His Great leading new life for Kevin. I don’t even have words.

Ok well I have a few words! You can’t just walk away. We never really will. This place is forever in our hearts and being. We can hear Ochsner. Literally when you enter the atrium there is a terrific friendly welcoming lady. Always welcoming. Always happy. Everyday. Always the same. Happy. Welcoming! The place from the first day that welcomed us with God’s rainbow over it. The very first day we had appointments for Kevin to be evaluated the rainbow was over the hospital. I took pictures! And I don’t even need pictures because it’s etched in my mind! Matter of fact the pictures don’t do it justice because of all the raindrops on the windshield. Each greeter, cafeteria and coffee staff, administrator, NP, nurse, surgeon, doctor we are forever grateful for. Just forever thankful. They chose this life of all things medical and are embedded in it from parking to bedside! And how do you just walk away. And to know that a precious donor family chose to donate their loved ones organs. To donate life. I stand in awe. Absolute awe. (Not to mention also in shivering tears) A liver was brought into this facility. Arrived on September 6 and made its way to the second floor operating room and into my son by His guiding wonderful hands and through poured out wisdom and knowledge and into two amazing sets of surgeon’s hands: Dr. Sonnier and Dr. Carmody. “I will praise thee; for I am fearfully and wonderfully made: marvellous are thy works; and that my soul knoweth right well.” Psalms‬ ‭139:14‬

We are so thankful. We thank God with JOY for Ochsner Medical. “I thank my God upon every remembrance of you, Always in every prayer of mine for you all making request with joy,” I have prayer cards. I think I’ve called them my Jericho cards before when I passed them out in Sunday School back in the day and wanted my ladies prayer requests and even said if you don’t write something I will make something up! I meant will find a verse to pray for you! And that verse in Philippians is like a bright shining illumination of happiness and joy. I was praying through my cards during Kevin’s surgery and wrote 9-6-17 in my chicken scratch on the top. And now I might just know what Bro. White meant when he would say: now someone hold my mules! When I get to that prayer card each day and see that chicken scratch date it stops my heart all the while infusing it with absolute joy unspeakable! My heart has a happy fit! So we will pack and walk away from New Orleans this weekend but will thank Him everyday in our walk with Him for all it has meant to us! It will be impossible not to.

November 6, 2017 Monday

Labs this morning. Dr. Tyson said last week: labs Monday. Only we never saw an appointment scheduled for them and Saturday when we realized it, messaged Nancy. We went in by faith because it’s what we know to do and sure enough Nancy thought she put the order in but it wasn’t there. It was a quick fix and almost no wait time but in that waiting room I heard and eyed 3 different people coughing! We couldn’t get out of there fast enough! He already picked up one virus so far this recovery and was hospitalized for it and ain’t no way we want to go through that again. I stopped short of interviewing each cougher once Kevin slipped back for labs but desperately wanted to. One woman sucked on an inhaler after so I’m thinking she was not contagious. But the other two??? We are waiting on a timeline. They should call with his Tac level or at least populate the portal with the lab results and I will follow with a call or message about what’s next. Keith and Cole are ready to come this weekend or the next and help load the heavy stuff.

As I was typing the above I had this message in the test results:

“Decrease cellcept to 500mg twice a day as WBC count trending down and increase tacro to 4mg in morn and 3mg in evening. Repeat labs Wednesday.” Those were actually reviewed by Dr. Tyson and it was last weeks labs she made the note on today. So we will still have new results from this morning. They did prepare us for this medication change up! The Hepatology doctor handles it a little bit different than the surgeons. So glad for the cellcept decrease. Both cellcept and tacro are antirejection meds. Cellcept was 4 pills both am and pm. So. Huge decrease! Those capsules are 250 mg each. Tacro (same as prograff) are only 1 mg capsules each. I don’t do numbers. Even the easy ones stump me! Lol!

So I’m thinking Dr. Tyson just wants Kevin’s labs stable before handing us off. I know we have an appointment on the books in Houston for next Wednesday the 15th but that doesn’t mean we will be released. It may mean things will just have to wait another week. But what do I know. I know by this Wednesday Caleigh will have completed her entire marching band season. And I missed it all 😦 Harvey changed so much of it but other than Keith and my great friend Shawn who videoed it for me I would have missed it completely! Keith’s video was good but Shawn’s was perfect! I told Keith she zoomed in on Caleigh’s section! I had no idea where she was. I’m not musically inclined. They are all so tiny on the field! We got to see Shawn again yesterday and cross off something on our NOLA bucket list: cross the Lake Ponchartrain Causeway and actually see that gigantic lake! It gets us out of the apartment and free from coughers! That thing is 25 miles across! We finally did it! We met up with Shawn on her way back from the beach! One crazy question about that causeway we are curious because crossing from NOLA to Mandeville it was free. Returning we had to have a tag (which we have a Texas ez tag) but had to pay $5. Which is fine. But why only one way:) We never did it before transplant because of the obvious. If we were to get the call we sometimes had to be 10 to 30 minutes away. It felt great to have that freedom. It’s weird but after living so long with phone charged and on loud and ready to go I have to remind myself we are done with that! Praise God for such a wonderful blessing!

3:30 pm Nancy called to go over what medication changes. I reminded her those were from labs on 11/2 and not today’s labs 11/6. She said she would point that out to Dr. Tyson. She said she is meticulous and the key word with her is “trending!” She wants to speak to Dr. Galati herself and make sure he is ready and willing for this transfer. I asked about a timeline and she is getting with her.

November 2, 2017

Astros Won The World Series! Now we can sleep!

Today was labs and Dr. Tyson. She’s wonderful! She was SOOOO happy to see Kevin. She welcomed him to the “other side!” She said see I told you I thought we could help you! And that she did. We met her at evaluation in July and the last time we saw her was Aug 31 before the transplant. (My first impression at evaluation was how very aggressive she was. Because she said then to like stop taking all meds! Then he would be sick enough for transplant! I was horrified! But it made sense. But then I was horrified because I knew what that meant for Kevin) She went over the list of medications and when we will stop some and which ones are for life. Basically the anti rejection meds and the aspirin are for life. 2 antirejection because of his autoimmune issues. Dosage on anti rejection will change after 6 months to a year. (Cellcept drop to 500 from 1000 by then) She wants his Tac level at 8 for 6 months to a year to stay on top of the autoimmune stuff. (Last labs it had dropped to 3) He will finish Bactrim March 5. Valcyte Dec 5. Urso is for now while his bilirubin is just a tiny bit elevated. I’m talking tenths. Not like pretransplant days! Plavix for one month and with that continue Pepcid while taking Plavix. It was for while on steroid too. Vitamin D and Aquadeks continue while his system is adjusting but should be able to roll off those and they will recheck those before taking him off.

The ultrasound Tuesday said there was still moderate ascites and she said she didn’t believe it after examining him. She’s not too worried about it and won’t put him back on lasix because she feels it will work itself out normally. She asked if he was feeling it like hard to breath and such. He hasn’t noticed any but we have been so tired getting those Astros this victory! She reminded us that the Saints Won the super bowl after Katrina!

Vascular. While that doctor on Tuesday said follow up in 3 months he told us it could be done in Houston. But then yesterday our portal populated an appointment for Jan 30. So she is going to see if that was just the coordinator reading the notes or if he changed his mind. We can make it work if we have to by hopping over.

We discussed his blood pressure. The transplant notebook says anything below 130/90 is a good read. He’s been above that lately. I mean it could be those Stros but she said ultimately with prograff increasing and his body adjusting to anti rejection meds for now keep watching this. 140/90 is fine but if it’s over we need to communicate because she may add something to help.

The pathology report. The team meets every Thursday and while we started this topic Nancy peeked in and said “they” want him to see hematology and get a pet Scan. Dr. Tyson had just said that same thing. While they can’t confirm anything she feels since it’s been a while and because of how many infections he had between last year’s bone marrow biopsy and transplant it would help to keep an eye on this. She thinks have this done in Houston so that center can keep the close eye on it. It depends on how quickly it can be scheduled. So that part could happen here if it’s soon. Otherwise she asked for Dr. Galati’s number and will call him and get his thoughts on hematology and transferring Kevin back to his care and when. (!) I told her we had a tentative appointment on Nov 15 and it could be moved. They are flexible.

For now labs on Monday. We hugged her and thanked her because we are so thankful for all she did and this entire Ochsner staff. We may or may not see her again but she said she wants to hear from Kevin along the way for him to drop them a note. She also pushed Tulane and then they could really keep an eye on him! Lol! I’m sure Nancy will be calling to tie up these loose ends. I think I wanted to hear a date when we can move home today but I’m sure we will know once all the teams here and in Houston have communicated and are ready for hand off. Kevin was wearing “His Grace His Love His Church” T-shirt and she saw that and said God is Good All The Time! Yes He Is!

11:50 Michelle a nurse for Ochsner called and already has Kevin a hematology appointment for today at 1:40 with Dr. Carter Davis. That works!

1:40 Dr. Carter hematology. Pasting the text to Keith:

The hematology doctor was excellent. He explained the pathology clearly. He said he’s not surprised by the lymphocytes in the old liver pathology report because of Kevin’s AIH. Also the pathology of old liver those lymphocytes are not “clone” cells which would be the case if it were lymphoma or cancer blood cells. Because they were all different ones that equals not cancer. He could reassure us also based on the ct scans he’s had. He read over Kevin’s case and seemed very familiar with it for this short of notice. He will report to the liver team that the pathology report has nothing that bothers him. The final test came back Oct 30. One test result that didn’t come back the T cell something didn’t even need to be looked at. However, he did caution us on PTLD. Post. Transplant. Lymphoproliferative. Disorder. While very rare, because of the immunosuppressant meds he takes can in rare cases cause that and somehow that’s related to Epstein Barre and that can cause lymphoma. All this is my words. Can’t fight infections so you get that. Almost everyone has had it. Symptoms tired. Unexplained weight loss. Enlarged lymph nodes. He was reassured and wanted to reassure us. The word of the word of the visit. Reassured. He wanted to be sure we understood because he was worried that we were worried because we were sent to the cancer building in one day! But. We knew why we were going to the cancer building. We’ve been to the cancer building in Houston to see that hematologist. And. We wanted answers to the “concerning” pathology report. So all in all a huge relief!

Tuesday October 31, 2017

7:15 am ultrasound

9:15 vascular follow up

Dr. Sternbergh was completely pleased with the ultrasound. He said it’s really what he expected and that 2 out of 3 things were just excellent. He didn’t go into detail about that third one because I think it was complicated but still good. He isn’t expecting any problems. He will pass this on to the Hepatology team and said follow up in Houston with an ultrasound in 3 months. I asked him to show Kevin the images he showed us after the procedure last week. I knew I couldn’t do it justice describing it to Kevin. Absolutely amazing. He has him on plavix for one month along with aspirin. He said most likely continue baby aspirin for life. He was already on that since day one of transplant. I have a list of medications to ask when to stop taking what. But that’s for Thursday.

Monday October 30

Fasting labs this morning and Nancy called later that his Tac level is low. It’s 3.5 so we are adding prograf. From 2 and 2 am and pm to 3 and 3 am and pm. We changed the blue card. She said labs again Thursday plus that’s the day we see Dr. Tyson hepatologist. (For the record the iPhone never recognizes that doctor term. It makes me insane. We’ve seen Hepatology for 6 years. When will it learn!)

Also we need to call Briova. They left a message on our home phone. The insurance mail order pharmacy company we use for the anti rejection meds. Keith needs many prayers for dealing with the travel department of our insurance. He spent an entire day in frustration with them. They “lost” one claim for reimbursement and denied another. Only they never reached out to tell us of either. They had the original copies so we got those replaced and are starting again. They will not accept a fax and will not give us an email. All I can say is they better be glad they get Keith. When we get released from here and if we are still getting the run around I will find the travel department and walk in with the documents wherever they are located! Have time. Will travel. If they approved all of this before we even considered coming here and they know we are here and have already reimbursed the three day evaluation stay I have no idea why they seem to be deflecting the rest of the monthly reimbursements. I have said it over and over I just want to know how stuff works. Behind the scenes. From hospital administration and “waiting for a bed” to insurance claims! There has to be a common sense approach.

October 27, 2017

Kevin is doing great from the procedure Monday! He never even needed pain meds! He’s probably like meh. I’ve had worse! So we basically stayed low until yesterday. We “drove” to a place to walk! Kevin was like so we are driving to walk. Well. Yes. I’ve been wanting to walk the Mississippi Levee. I could see people on it from every window view we had when in the hospital. I told Kevin then we are gonna walk that Levee someday. Someday yesterday! (Parked close to the Huey P Long Bridge and walked to it and back to the car. Just enough for Kevin!) We are also finally connecting our little area with the rest of the place. Like who knew I’ve been driving to Kenner! The airport is in Kenner! We live 10 minutes from that. People say they landed. We leave the apartment just in time for them to be curbside! The River Road that runs behind the hospital also took us the “back way” to the French Quarter yesterday. We had nothing but time on a beautiful fall day so we went out! Magazine Street is basically 6 miles of Old Town Spring btw! We actually had seen some paintings before on a trip down there in Jackson Square where the artists dwell around the rod iron fence and thought we might get one to remember our time here. Well. Yesterday we didn’t find anything but the weird ones. And a $575 tuba one. So. Maybe another day.

Keith and Caleigh took in Klein Cain’s spring drama last night. It was daddy daughter date night. Dinner and the theatre! Even spelled “re” on their website to get tickets. He said the play bill is in a link. They don’t hand them out anymore. Wat!? (Really people! Does everything require a link! One of these days that World Wide Web is gonna fall out of the sky! I can see it now: what part are you playing to clean up the web! Politicians will run on this platform one day. Mark my words! It’s got to be getting close to a point of NO MORE! The Web is Full) And most parents just dropped off their kids because he said when they walked out there was what looked like a carpool line for pick up! Well. We aren’t those parents! Kevin and I always loved seeing those productions! He didn’t even know about it until Caleigh came in and said they got to see a sneak peek in class and they HAD to go because she HAD to see how it ended!

Keith is hosting several of Caleigh’s friends again tonight. This time they are getting costumes ready for tomorrow’s Fall Festival at our church. The girls are all pieces of fruit. Me personally thinks Keith is a basket case for letting Caleigh talk him into this so he can be the “basket!” He never reads my page! He’ll never know I called him that… He is trying to one up me on the mom status too. He has Ruth’s homemade sugar cookie dough ready! Like it isn’t Christmas!? He said just in case! Ummm throw them in the pool just in case don’t add another layer to clean up! (Mind you Cole already said the last time he was home from grad school this house needs a mom! Lol!) One good thing about having friends over is they have to clean then! He called last night to boast about that too! Said all it took was a little effort! So Cole will be happy when he walks in today. Only. Maybe not. He doesn’t know about the friends Caleigh is having over…yet.

Might as well throw this one in while I’m updating the home scene. We’ve gotten one letter from our subdivision since I’ve been here because of the crazy weedy back yard! All that has been fixed now. The weeds are gone. They were as high as we’ve ever let them get. Keith even has some tool to snip the palm tree fronds with. And you know how close I was to writing that committee a letter! If they only knew what was going on!?! The. Very. Idea! And I’m like which neighbor turned us in?! Or how did they see our back yard!?! Maybe drones are doing the checks theses days in Gleannloch Farms! I begged for a picture. Keith NEVER sent one. Smart. Man.

Shawn Frost is passing through on her way to Florida this weekend so we are excited for that visit!!!

Next week Kevin has fasting labs Monday morning (the usual), an ultrasound, vascular follow up appointment with Dr. Sternbergh on Tuesday, and we see Dr. Tyson the hepatologist on Thursday for the first time since transplant! She is now who follows his medication (Tac) levels. And most importantly she will release us to the Houston team! That’s how close we are to going home! I’ve even turned in the move out date form because if you don’t you pay another month’s rent. The official move out date is BLACK FRIDAY! But I’m hoping to be released mid November. When we were deciding to do one more month here Kevin was only about 4 weeks post transplant and we just didn’t know. He used the transplant team here to help guide our decision to stay one more month in the apartment and sure enough had we decided not to renew the day of his procedure last week we would have no place to go. Well. A hotel or something but we praise Him for directing us each step of this Red Sea Road! (That reference is for you Heather!)

October 23, 2017

Arteriogram this morning. Dr. Sternbergh is doing the procedure. They said the actual procedure should be about an hour to an hour and a half and the recovery is 4-6 hours. Keith flew over to wait with me.

9:45 am Anesthesia was just in. Kevin signed consents. He said it could still be about an hour. The nurses walking me back said what a tough kid he is. He didn’t even flinch when they started his IV. (Tell me something I don’t already know!)

1:00 pm they just rolled him back.

2:15 Dr. Came out. He said the procedure could not have gone better!!! You should have seen the narrowing! He was like Dr. Brandt with Bailey and had his phone out showing pictures! Oh. My. Goodness. It was practically closed. Now it’s GOOD and open!!! He placed a 5mm stent. He will be good for life!!! He said his bigger artery made him able to do that. Most stents are smaller. Praise the Lord!!!!

3:00 Keith and I are tucked away in the hospital bed “parking lot.” Kevin has to be flat on his back for recovery until 8:30 pm. They said he can eat whatever he wants but they will tilt the bed up. He is resting now and maybe will sleep through. We have the lights out but we can hear the neighbors through the curtain. And we pretty much know their personal history. Hashtag: where’s hippa now?

9:00 We are back at the apartment! Every single nurse and dr and etc told us how strong Kevin is and what an amazing job he did through all of this! No complaints. Just steady. Maybe now we have turned that page! Countdown to Home. Ultrasound next week with follow up to vascular is what is next. Well what’s actually next is feed the boy. We are ready too. With Keith here and his love for walking up and down every aisle of the grocery store we happened up on my favorite Monjunis pomidoro sauce! Wat!?! All this time I had that at my fingertips! Usually we have to go home and smuggle back jars or get it for Christmas. Kevin doesn’t love spaghetti but it’s my favorite dish ever! I would ask for it for my last meal if I were ever in that position! But he likes Alfredo so he gets that. The more Monjunis for me… yum.

*blue card update. He added Plavix for short term. We need to add that to the blue card. We picked up the script. He starts it tomorrow. They gave him a dose today.

October 18, 2017

Kevin had labs on Monday and two clinic visits yesterday. Labs are the best yet. Tiffany and Bailey got to go with us to clinic. Bailey listens so good when the doctors come in and talk!

Vascular: Dr. Sternbergh went over the CTA results. Kevin does need a procedure next week to open up that hepatic artery where the new liver was connected. The ultrasounds have been showing the “turbulent” images around that connection and they have been watching it. The last ultrasound in the hospital last week caused them to order the CTA to get a clearer picture. That showed “short segment of high-grade stenosis of the hepatic artery presumably at the anastomosis.” Dr. Carmody sketched us a picture of the smaller and larger arteries connecting saying the flow does change here last week during the “observation virus” hospital stay. Sometimes it’s nothing. Keith explained it with oil field pipes and images:) The vascular doctor we saw yesterday is the one who does all the transplant endovascular procedures. He said while it’s not a completely common thing it does happen in 5-7% of transplants. It’s totally treatable. He said his job is all about keeping the best flow and currently Kevin’s artery has “severe narrowing.” Friday his office will call us with the outpatient procedure time for Monday. They will go into the top of the leg. We pointed out the soreness from transplant and he said they will check the area with ultrasound before using it. If there is any doubt they will use the other side. The arteriogram will give them a picture of the narrowing and how best to open it: balloon or stent. If he uses a stent it will be in for life. He said it’s not one of those that gets replaced. Kevin does have an unusual anatomical artery there but he said it’s just the way he was born and had nothing to do with the transplant but it does explain how he has to get to the area. (Not that I totally get that. But it’s Kevin so of course he’s in the 5-7% and was born with that!) He had Kevin sign the consent forms then his nurse came in with a booklet of what to expect and surgical shower gel packets to use before surgery. Nothing to eat or drink after midnight Monday.

Transplant: We then saw Nancy and Dr. Bohorquez one of the transplant surgeons. He looked up the pathology report and said it seems like it’s all settled. I would prefer to hear from Dr. Sonnier on that since he was on rotation when that “lymphoma stuff” was brought up. Just me. Personally. Nancy said Kevin will do the procedure next week. Still Monday labs and take prograff not cellcept. Have a follow up with vascular at 5-7 days from it. After that he is cleared from surgeon visits but has to see Hepatologist. Dr. Tyson is that doctor here. We’ve seen her at evaluation and pretransplant. She then will release us to the Houston team. Not sure if we see her once or twice. She will adjust meds like surgeons have been doing to keep an eye on his levels. Nancy said to go ahead and make an appointment 5 weeks from yesterday for Houston! I’ve already started that first thing this morning! They will not let him go until he’s established there. Even then they keep an eye on the labs until after he’s met with transplant in Houston. So, our days are numbered! I was so excited to hear five weeks from yesterday until I looked at the calendar and that’s the very week of Thanksgiving! I don’t do numbers so I don’t know what I was thinking. I was hoping it would be two weeks! It feels like it will be two weeks! So let me live in those #unrealisticexpectations.

October 12, 2017

5:30 CTA we will get results for this next week. He was back in no time and we packed up and we’re outta there! Home and resting!

3:35 Devon Hopped back in. NP. The CTA is on for today. In about an hour. So NPO for now. His late lunch just arrived so glad he was showering and not eating so we can knock this procedure out then maybe be discharged.

3:00 Dr. Carmody the surgeon who did the transplant came by! He said he saw that Kevin was in. He asked if he could bring by two medical students. Sure! He explained a little more what they may be seeing when they say “turbulent” and drew a picture of Kevin’s huge vein reminding us of the huge liver he removed and the smaller liver with attaching it to a small artery. Small to large equals turbulent flow. I asked him if he wanted to tell them and he smiled and said he didn’t want to be in “surgical denial” and say you weren’t there in the OR there was good flow. Because he said stuff happens in this situation and he didn’t want to say no don’t do anything about it. And this is common. My guest tray was delivered. He seemed awed by that. I was like I’m not leaving the room and miss information coming in that door:) I told him I was taking this to Houston! Let the guests pay for a tray!

3:00 Someone from vascular I didn’t catch her name. She said he had some “elevated velocities” and would talk to the chief vascular doctor (Sturnburg?) and one of two procedures may happen. A CTA where contrast is bolused (spelling?) in through IV and if they see a narrowing of the artery they will use a Cath to open it up much like they do in the heart. I wrote down the word endovascular. It really has nothing to do with why he’s in here and the procedure may not even take place today. If they can get it scheduled tonight they will. They may simply repeat an ultrasound in two weeks.

2:30 NP Devon

He said the ultrasound had one image that he wants the vascular team called in on. Nothing too concerning but he wants their input. “There is a change in the hepatic artery.” They call the image “turbulent” and that is from the flow of blood through it and the waves it generates in the image. He said worse case scenario was a need for another procedure or stent. It is the artery with blood flow to the liver. Could be from edema (swelling) with it compressing and shifting. He studied all the previous ultrasounds. He even gave us the option of not knowing what was next. We were like oh no. We want to know. Knowing is better than not knowing or shock and awe! Because in my mind I can imagine way worse than what he e explained.

11:00 Still in the hospital under observation. The ultrasound that was already scheduled for his one month happened first thing this morning. We’ve seen social worker, NP twice, and surgeon Dr. Marthur. They need to let the magnesium drip in his IV and see that the ultrasound is fine then we should be free to go home. Everything looks fine from yesterday’s CT scan. Random fluid still present from post surgery. They are not concerned about that. Labs are good. They held the cellcept so I need to ask when to restart that. Kevin voiced yesterday just how nice it was to hear them hop in and say the labs look great. They would even explain that they looked for pancreatitis and would tell us what that was (oh how we know but they don’t have to know we know!) and hearing them say no signs of infection brought such relief. Like we didn’t think he would have same old stuff with the new liver but here we are. It’s just so completely weird to be normal. Hydration. Quickly. So he can keep anti rejection meds down. I’m very thankful. One new tidbit we learned the NP said when they say don’t eat or drink before an ultrasound we can ignore it because he’s post transplant and does not have a gallbladder. The gallbladder is what blocks the view and messes with images. Who knew. Kevin told me later he was going to not eat or drink only 4 hours before. 🙂 They called this a “bump” in the road. We have a room with a view of the Mississippi River and the Huey P Long bridge. That never gets old. Now Keith and Caleigh on the other hand… end of the nine weeks. That’s an entirely different story. She needs just one ounce of OCD in her to survive being home with daddy! And she was given zero! No Stress and mediocrity are her bffs! Pray for Keith!

Oct. 11, 2017 Yesterday’s Neurology Today’s ER

Neurology appointment at Baptist Ochsner facility yesterday with Dr. Brandt. She examined him. His question and answer score was 65 and anything over 55 is worth figuring out. My words. So his headaches since they are recurring. Right side. Painful. Long term history. Off and on. No need now to determine triggers because of all the new meds but she gave him two meds for as needed. One he’s used from Dr. Pope called triptipan (?) and the other a nasal spray that has a z in it. And a “free trial” coupon that cost us $113 at the end of the day. Even the pharmacy tech kept running the coupon cause she kept saying free is free!

Currently we are in ER. He was vomiting and nauseous all night:/ :0 I will paste my text thread to Keith cause I’m sure we will just be here for hydration and get those meds in to keep him from rejecting. Can’t take rejection meds if your not keeping stuff down! And the only place he went was to that Baptist hospital!

Thread to KT:

Rough night. Kev was nauseous he thinks from not having enough food in him when he took 8 meds last night. It hit him at 1 am. Then at 3 he asked for more meds for nausea. Label said every 8 hours. But it’s 4mg pills not 8 mg dissolving ones. So at 5 I gave him another one. He was even in his bed. First time to try to sleep on the night back there. By 5:30 he came and got me he had vomited. I had a trash can ready for him earlier cause he asked for one. Poor kid. And it’s time for meds again. He wants a piece of toast.

Vomited again. Can’t take meds. Called Nancy. She’s calling dr. He may have to go in for IV they don’t want him to rehydrate.

Dehydrate

Nancy wants us to get him to ER. Dr said. IV. Needs meds and so I’m rushing to get ready to leave.

Oh my! Call me when you have a minute and things have calmed down. I’ll step out of my meeting…

Ok. I’m trying to think how to get him to ER and park. Was there a valet closer to ER like where you dropped off your mom?

Yes

They have valet there, too.

Ok. No one was there but finally they came. In ER room now

Okay

BP 164/104!

I think that is typical if in pain, or vomiting/nausea??

Yes.

They just said that same thing

Good

I’m not a doctor, but I play one on text message

I only know recently what it should’ve been under 130

He’s got IV in. No fluids yet. Labs drawn. Waiting on dr.

10:25 Inconceivable. CT scan ordered for noon. But before then he needs to drink 2 full cups of CT nasty fluid. Contrast junk.

Do they not understand nausea and vomiting?

I know. Right! Great day! They gave him zofran and pain meds

How bad is the pain?

7

Oh wow! I didn’t realize he was in a lot of pain, too.

11:00 Met Denise the NP from transplant. They may admit him after CT scan or if he feels up to it and all is ok they may discharge him from ER. His labs are excellent. Won’t know anything until after CT scan. He’s sipping the nasty contrast. Almost time for the next cup. BP 138/97

12:15 taken to CT scan

1:00 ER dr said CT scan looked good. Nothing abnormal. Getting with liver transplant team to see what they want to do. We are so tired. Not great service in the room. I have to step close to the door to get service.

3:30 Surgeon Dr. Martur came in w NP Denise. They can’t admit him officially but can keep him under “observation” overnight just to be safe. So we have a room upstairs already they said. He has a bad headache now.

6:00 the Nurse brought his prograff. I am the literal beast and we take that at 8 and 8 so was going in full panic on her for several reasons. He hasn’t eaten anything. We are in here for nausea. Give him anti rejection meds on an empty stomach and he’s gonna be MORE NAUSEOUS! I’m a mom. You are an ER nurse in America! How do you not know that! Also he had a horrible headache. Horrible. So we asked for headache meds who knows how long ago. No orders were in. Finally orders are in and she brings oxycodone. I said that’s not what he takes for a headache. And named the several that he can have. So she went back out and got it. We couldn’t have a nicer nurse but somehow nice today isn’t good enough?! Lol!?

7:00 we got to the transplant step down unit floor. Observation. Just in time for the cafeteria to close. Kevin said he doesn’t want anything so that’s a good thing. They gave him a sandwich in ER to have something before taking meds. He had half of it and a graham cracker. He had enough water to take meds. But no water the rest of the day. Not even a pitcher and glass. I guess cause it’s an ER room no frills. But I just told this floor nurse that I think he’s going to dehydrate in the hospital trying not to dehydrate. He had one IV fluid early this morning. Since then only sips of water with meds. The transport guy got there so he was ready to move Kevin. He asked in the hall if Kevin needed the telemetry. Someone said no. So the transport guy removed the telemetry. I already felt like I was running too much so I hated to tell that guy who touches every elevator button and door handle in this hospital please step away from my son’s incision! Another nurse came bolting in but it was too late. So we made helpless eye contact with each other. I asked Kevin if he noticed and he said why didn’t I say something cause it’s too late now! Lol! The NP for transplant is going to stop by then I’m leaving for a quick trip to grab overnight things. And maybe nourishment for me!

October 9, 2017

Labs were really good! Liver enzymes are in the middle of normal range. The creatinine was elevated. He’s finished a couple of meds so from a dozen to ten with more to drop off along the way. They just need to see him stable. He sees neurology at Baptist Ochsner tomorrow as a consult for headaches. I actually called ahead because we have not been to this campus. The girl said get to the second floor and ask the director which elevator takes you to neurology. I said I thought I was calling neurology. I saidwe have never been to this campus. And asked her what elevator she took? Like is it letter or color? So she repeated once in parking garage get to the second floor and ask a director which elevator. And could she help me with anything else!? I had it on speaker so Kevin could hear and see how patient I can be because I wanted to scream well how about helping me with what I called for!?! But instead I said thank you and hung up. There was an optional survey but I already wasted too much time! We will go Keith on this appointment. Leave early. Earlier than any normal humanbeing would!

He’s still having headaches. They were more intense leading up to the weekend so since his Tac level is lower I was hoping that would help relieve them.

We also wrote the thank you to the donor family. Big sigh. Tears fought. I joked with a friend that there isn’t a Pinterest board on thank you’d to organ donors not is there really a card. But I would look in every store and finally found a simple blank one with pretty green stuff on the cover. It spoke to me because of my new love for green being the color of transplants! I penciled on paper what Kevin wanted to say then he wrote it from that adding a few words here and there. But really what words do you use. I know if it were me receiving the letter I would just want to hear a tiny bit about who got the gift and a thank you. So we kept it simple like the transplant notebook recommended and added these verses that I can’t get away from at this time in my life. Philippians 1:3-4 I’ve always loved verse 3 since my Louisiana Tech college professor mentioned in in class but this time around I really looked at that next verse:

“I thank my God upon every remembrance of you, Always in every prayer of mine for you all making request with joy,” Philippians‬ ‭1:3-4‬ 

We thank God with JOY for this gift given to Kevin! I looked it up in every translation and it just made me have happy tears. 

October 8, 2017

Well, Nate went east! We were as ready as could be. The coordinators even call to check to make sure we knew there was a storm out there then asked if we had plenty of medications, food and water, and to know they were available 24/7. Houstonians know how to hunker down! But there is also nothing like seeing the hand of the Lord. We prayed and asked Him to protect us and the people in Nate’s path. I feel like He knew the pump situation in New Orleans couldn’t take even a Cat 1 or 2 hurricane so His hand shifted it over ever so much. I screen shot the path of this thing all along the way from the moment we first got word of something. Our apartment complex sent an email mid week giving us the list for hurricane preparedness. I was like what! It’s October. Sure enough my faithful Click 2 Houston hurricane app had Nate out there. We were ready. Curfews were in place. Everyone was to be sheltering in place by dark on Saturday. All devices charged. All chargers to charge without “walls” were charged. And an hour after the curfew they lifted the curfew because of the storm shift. We kept sheltering because Nate was exactly east of us and storms do unpredictable things. It was too close not to be careful. Praising Him this morning for completely protecting us from the storm. And from us almost flooding our own apartment! We filled up the tubs with water only for Kevin’s huge tub to empty in no time. So I sent him back with a lid and told him remove the drain thing and put this down. Mid way preparing a blue apron meal I asked did he turn off the water! Just like home with the pool. If we don’t set a timer we are toast! It was to the brim full!!! Caught it just before splash down! Yikes! Fasting labs in the morning for Kevin. He’s been dealing with headaches off and on so I can’t wait to see the Tac level and the neurologist on Tuesday.

October 7, 2017

Waiting for Nate

We are ready and hunkering down. Tuesday at clinic Kevin got his staples out! He’s already much more comfortable! He’s tried to sleep in the bed but the still small amount of fluid makes that uncomfortable. We saw Dr. Sonnier in clinic and he did let him have the headache script. And he’s needed it a couple of times this week already. So thankful for that relief. The “lymphoma” issue from this time last year is popping up again because of the pathology report from the surgery. They went over this report with us in clinic. The donor liver was biopsied along with Kevin’s old liver. The donor liver is excellent. The old one well it’s all the same old stuff. And from last year’s bone marrow biopsy the final word was something like his body is doing what it’s suppose to at that time. Huge spleen. Huge liver. Huge lymph nodes doing their job. The report in clinic was from Ochsner and they sent it to Mayo Clinic. There is one test outstanding but Dr. Sonnier asked for the results from last year’s bone marrow biopsy and it was sent to Dr. Sonnier the very next day. He passed them to the pathologist. Praying it will all reflect the same. I really don’t know what to think about all that. So will wait and trust. I know Dr. Sonnier examined Kevin well. Practically tickling him under the arms all the while saying he himself couldn’t handle an exam like this! Kevin said later it was ticklish. So cute. But when I told them we had this issue pop up about this same time last year I might have seen relief on his face. He said it was good to know someone else was thinking along those lines because their pathologist was “impressed with the size of the lympho” something’s (?). Sorry. Can’t remember that word. It was one blurry time last year. He had just been listed in Houston and endocrine, oncology, infectious disease teams plus hepatology, hospitalists, rheumatology… I feel like we walked through it with faith but didn’t bow down to the crazy what ifs. And it ended up being nothing then. I get that they needed to know especially being listed recently then and he couldn’t have any high risks over his head if a donor became available last fall that would cause those surgeons to hesitate picking Kevin. I’m thankful for a great memory and this page. I could give them the wonderful doctor’s name who we went to and they called her. Plus, I don’t know how anyone could forget a bone marrow biopsy. It didn’t happen to me but goodness. After the doctor telling me she’s had grown men scream during it and Kevin was just so strong. It may as well have happened to me! Cole drove Kevin to it last year and I met him there because it was our church’s annual couple’s retreat. We go to Galveston every year. It’s inconceivable that it’s been a year! Gonna keep our eye on Nate…

October 2, 2017

11:25 am We called Nancy and she returned our call very soon. We called because of the horrible headache. He’s at his maximum dose for this 24 hours of Tylenol. (2,000 mg max) And sadly Tylenol doesn’t even touch it but we had to try. Advil was very effective pre transplant but that is on the Do Not Take list. So she is checking with the doctor about what he can take. We gave her his headache history again and what has worked. The Fioricet (acetaminophen, butalbital, caffeine) is what he’s taken last year and they would give him at Methodist. So we will see. GREAT NEWS the liver enzymes are TRENDING BACK DOWN! She said those are back to normal range. She does not have his Tac level yet but will get back with us. She thinks it could all be related to the meds he’s on.

Horrible Headache

Kevin took Tylenol for a headache after 9 last night then went to bed with it worsening. I actually slept on the couch by his chair he sleeps in because he just kept needing head massages. I even pulled out ice packs and cold cloths. Nothing. We had labs at 8 am and are waiting to hear from Nancy and will ask what else can he take for headache. I’ve combed the side effects pages of the medications he’s on and prograff (on for life) and valcyte (stops Dec 5 according to the blue card) have headaches listed as side effects. But he’s also a headache kid. He’s had migraines. Not completely sure if it is even weather related. We had rain yesterday so it brought humidity. Poor kid. Headaches are the worst!

October 1, 2017 Healing Here with Kevin

It’s October. Reflecting back on my college days I always loved October. Things were no longer back to school but an established routine was in place. I was walking again across campus being not faithless but believing. I repeated this newly learned scripture because I was a literal over achiever stressed about not making an A! And overwhelmed with being in college. College. That’s for smart people. Today after streaming our church services with Kevin in the apartment I was loving the message and wanted to add more to my prayer card section on forgiveness. It had one card with two verses. After today I’m flowing in forgiveness verses and strengthened in that area of my prayer life! And so thankful that our church now streams live. All these years technology never meant so much to me as it does now. And the timing, I’m sorry but am claiming my God sees me and Kevin, and for now, his careful keeping at the apartment, and He allowed the door of live streaming to open at our home church for us:) I know so many places we can hear sermons or stream but after being away since July 24 it’s just so welcome in my heart! I just was walking by Kevin who is resting, and I can’t help but be so thankful for Keith too. He is doing so much while I get to heal here with Kevin. Actually I’ve accused Keith of becoming me with all things Caleigh and homework! I’ve actually heard him enunciate and clench his teeth! I’m the one saying be nice be nice be nice! He even dragged her out of bed at one am after seeing a “remind message” about some homework that was due and wanted to see if she had it done! He called coming home from work one day telling me that he had a spread sheet put together of all the things she hadn’t turned in or was missing! Yikes! A Spreadsheet! You do not want to get between THIS man and his spreadsheets! He’s doing so good! He’s letting Caleigh have friends over and even taking them to fun places. After homework of course. He is getting to connect with Caleigh while I’m here healing with Kevin. He’s taking her to school. Picking her up most days. Getting her to all her activities from band to tutoring. He’s always been available anytime I wasn’t, but never this long term. He did however recently mention he told the Callanan’s he’s giving her back to them! But I think they have a successful system in place now.

Kevin was standing in the kitchen Friday night and prayed over our pizza. (I can only Blue Apron prep so much people!) And I realized what a rare sight this was. We get out for labs and clinics. He walks around the apartment and interior grounds But seeing him and that day no gauze! I said I need to hug you! And I started crying while hugging on him. He is still hurting and tender so it was a gentle hug but oh so precious. And I cried and he laughed! It reminded me of grabbing Cole his last day of 8th grade in our living room without the fan. (Cals description only now it has a fan so it’s the living room that use to not have a fan!) I wanted to see Cole get off the bus for the last time as a Doerre Warrior and when I walked in from the garage he was standing there! What! I circled my arms around him and bawled. He just smiled and laughed looking down completely not getting it! And this hug to Kevin was the same. He’s been kind of unhuggable these days with all that new liver stuff going on. Well, and it was just too much. Especially laughing at myself because I recently had spoken to a good friend who was cleaning out her boys rooms and found a P. J. Funnybunny book and was crying over it! I even gave her the “Emma Award!” but asked for it back in no time! Keith is right. Misery DOES love company! I’ve cried to her so many times over the dumbest things! And boy can I relate to her finding and not knowing how much it bothers you. Delayed reaction can be impossible to get through! Of course I cried with her but also have to chuckle just a little. Because I KNOW when I was crying to her over the seemingly insignificant things that reminded me of change, she was thinking: there is just no way that’s ever gonna be me. I know because I thought the same thing! Then it is. And so today I am so thankful for October. Again. Because change does happen but so does October!

While we have a routine here now we are also seeing how close to home we will be soon. And when I see Kevin I am thankful for Jehovah Rapha my God who heals. I continue to ask Him to heal him from the inside out. But I GET to be here with him while he heals. God made this all happen. He answered prayers here we didn’t even know to ask. He’s healing ten minutes from Ochsner. There are speed bumps all through the apartment and hospital parking lots. No big deal unless you look sawn in half being held together with 77 staples! Even going over them slowly and carefully it’s so painful to watch him out of the corner of my eye. I just keep apologizing! And secretly hating the speed bumps! If we were home, I mean I know I say the Hardy is my friend but with all the labs and appointments I now see he’s doing post transplant we would be in the car forever! More than Kevin could take. God sees. He knew that. We didn’t even think about that. What even in Houston is a ten minute drive away!? We can’t even get out of our neighborhood in less than 7! (I timed it in my 4 kids in 4 schools carpool days!)

I’m learning to cook the Blue Apron way. This is unlike anything I’ve ever experienced. I wouldn’t have done it in Houston because I have a full kitchen and pantry. This box comes to our door every Tuesday. Kevin loves picking the recipes. I love to watch him study food. He’s a Foodie for sure! It’s the least stress I’ve EVER been over that ever present dilemma: what’s for dinner!? I don’t even care what he picks. I have no idea what we are having I just know it’s gonna be good! (Unless it’s fish then he gets a double portion and I get lots of yummy veggies!) I’m learning new techniques and just different ways to make fresh vegetables! It’s the neatest thing.

He’s also healing away from all germs. We are isolated here and we didn’t even think about that part either. They say not to be around crowds for three months. Other than when company comes (and no one comes if they are sick or think they are!) He’s getting to heal and have the strongest possible recovery. I’m a mutlitasker to the bone. And I know if I were home I would be distracted by so many things! I really do get to keep just the closest eye on him and truly take care of his every need. He may be twenty but I can’t help but see my little no kneed cutie when I look at him sometimes. And to think what all is going on inside of him I just want him healed. Healed from the inside out.

September 29, 2017

From the labs this morning his liver enzymes are still creeping up. Not as up as before transplant but above normal. Today they are 47/53. His tac level is 6.3. Creatinine is 1.1 We are adding back a mg am and pm of prograff. So, 2mg of tacrolimus [generic of prograff anti-rejection med hence the term for the test tac level] (We had to remove one earlier because of the elevated kidney function levels and because of the lasix for fluid retention) He’s not wearing any gauze at all today! Nancy was happy to hear it because she knew he was battling that! So labs again Monday and based on those labs maybe a biopsy. She is scheduling one now and will most likely cancel it but they just like to be prepared and cautious. She also wants him to STOP taking aspirin until after they determine if a biopsy is needed. We noted all this on the blue card. And I opened the transplant notebook to reread the “Rejection” page. Here are the 4 things to watch for

1-Elevation of liver function tests from blood work.

2-Temperature of 100°

3-General feeling of malaise/tired flu-like fatigue with aches and pains.

4-Dark urine light stools

TREATMENT:

Treatment can include:

•Increase dose of prograff can effectively treat rejection

•Sometimes steroids are increased (sometimes hospitalized for IV steroids)

•Thymoglobulin given by IV (hospitalized for this as well)

***reminder that almost all transplant patients have at least one rejection episode at sometime. The most crucial time is the first 3 months. The blood work is the earliest sign of rejection even before the patient looks or feels bad.

It is a fine line they are walking with Kevin trying to “trick” his body. Nancy uses that line often. The meds have to make the body think the new object is not foreign even though it totally is. I’m not jumping to anything. I’m remembering several influences on this situation. Good ole pediatrician Dr. Pope says when you hear hoofs don’t look for zebras. It could only be horses. My dad has survived two rejection episodes. And my God is seeing all. And that gives me great peace.

September 27, 2017

Nancy called with lab results from this morning. Creatinine is 1.2 so it’s going down. Liver Enzymes are trending up and “they” don’t like that. They were 18/29, 30/34 and 40/41 now. Tac level is lower 9.3 So. Labs Friday. They want to watch it.

September 26, 2017

Wow! We had a marathon long weekend of fun and family! Kevin had one rough night of random pain at an 8! But so far this is Tuesday and that hasn’t happened again. He had labs yesterday. They called and said stop the lasix and drop the prograff to 1 mg twice a day from 2 mg twice a day because his creatinine (kidney function) was 1.5. (Elevated) And his prograff level was high at 11.3. Normal range is 8-10 and she said they’ve been running it high. His BILI is the lowest ever at 1.9! So out with the blue card and change the prograff dosage. Then today he had a clinic visit with Nancy and Dr. Mathur. He said keep the dose of prograff the same. Absolutely no lasix. Labs tomorrow. And normally the staples would be removed on this week but since Kevin is still leaking from a drain site and the incision they are waiting until that stops. Otherwise it could be too moist and cause it to open. We don’t want that! So our questions: is this leaking normal still. (Yes) can we get more mesh please! (Kevin had 5 but we bought some thinking it would work and I wouldn’t have to keep washing but it didn’t. Kev had already cut off a couple mesh things so it left us with three. And that’s a lot of pressure to keep them clean and dry and ready for bandage changes! So they gave us plenty!) The main meds came from our mail order insurance and the cellcept (prevents rejection) didn’t look like the one from Ochsner discharge day. So we had them look at it. Transplant education at discharge day said to make note of manufacturing changes because sometimes they want to watch those labs closer. When are labs needed again? (Wednesday) Kevin lost 10 pounds right out of the hospital. He gained 10 with all the fluid retention. He’s back down 10 pounds. So we are hoping that means the fluid is absorbing. No ultrasound this week. The doctor didn’t think anything changed that much. He cautioned us on that creatinine increase. He said it was a 50% increase and they just don’t want to be careful with that. He said his liver numbers were a bit up at 30 and 34 but they are still in the normal range.

September 21, 2017

5:30 Nancy called. Ultra sound images were good. The groin area has a hematoma, and it will resolve on its own. Caused by the line they needed during the surgery. Bruising is normal. Still no timeline. But she said she is getting it for us!

Tiffany and Bailey flew in! I had the place ready for her! Washed all the soft blankets in dreft. And vacuumed and swiffed. Sure enough once we walked in the door we spread out a blanket and she was all over the place. Playing and getting around. She played so hard she was out of breath!

September 20, 2017

Heard from Nancy the transplant coordinator. All numbers from labs this morning are good except for potassium. No bananas. No orange juice. He can have grape juice. She is checking on the time frame for us for length of stay. She’s putting a note in for Dr. Cohen for tomorrow. We are at back to back ultrasounds now. 3:30 and 4:30

September 19, 2017

Clinic visit at 1:30 with the surgeon. This one was new to us. His name is Dr. Humberto Boroquez (tried to get a good look at his name tag since he was new to us and they rotate through clinic) He was the best! So nice! And speaks with an accent. He answered all our questions and checked Kevin’s incision and bruising sites from all those removed lines. He’s adding to tomorrow’s ultra sound the groin area where there was a line removed because it’s bruised and painful. Just to check.

Questions answered by Nancy our coordinator and or the surgeon:

•timeline here especially for our apartment. The 3 month lease ends 10-24. 5 weeks from today. Nancy is checking with Dr. Tyson his hematologist. The timeline is tricky. They want to watch him closely so it depends on how the leakage does. What the ultrasounds say. They are mostly following the fluid. She explained again the last one with the crazy medical terms I wasn’t following. It made sense while in the office. Not anything I could comprehend enough other than to be relieved it meant totally NOT what I thought when reading it for myself using dictionary dot com for all the words I didn’t know!

•He had his first post transplant headache. Bought Tylenol and a coke. Because life before transplant Advil was our friend. Now it’s the enemy. The headache could be from multiple things. We hope he still doesn’t get migraines but most likely a side effect of elevated prograff levels even though that was late last week. His hands were a little shaky which is also a side effect of some of the meds. Diflucan also causes prograff levels to go up so once that is stopped they will watch those levels even closer. (10/6) Vitamin D needs rechecked in 12 weeks.

•bruise and pain in groin area from removed line. Adding to ultrasound tomorrow.

•JP drain stitches will be removed when the staples are removed. They don’t want to do that while there is still fluid seeping out because of the risk of infection. They want it to be healing. Usually it’s about 21 days. Tomorrow is 2 weeks for Kevin.

•for the leaking the surgeon said instead of tape he could use this mesh stuff. Well Nancy came in later with it and was like trying to stretch it over his head. He ended up stepping into it and it holds the drain pads in place without taping. I have bought every kind of tape imaginable on the gauze aisle!

•the surgeon checked his areas where he is leaking the most and said it’s more of an inconvenience than anything. He said he will put him on lasix through Monday.

•I told the surgeon it seems so amazing he got out after a transplant on day 5! He replied that’s what being 20 will do for you!

After the surgeon left Nancy hopped back in with last minute things. She added lasix to the blue card. We told her how much we loved that surgeon and she said he’s the one that goes to Puerto Rico often to help them with transplants. They use to have a lot of patients from there but now they have been trained and are doing their own. She said his favorite thing to say is “You got a plan?” We always need a plan! And Kevin’s plan for “crap” shirts worked well. He walked around the hospital in a black and gray type one and the wetness was hardly visible. I told him no one cares and we are in and out! He agreed with the doctor, for what he got in return it is hardly worth complaining about the inconvenience.

September 18, 2017

Amy called with labs. His levels are stable. Repeat labs on Wednesday. Clinic visit Tuesday. Ultrasound also on Wednesday.

Tac is 8.4 / BILI is 2.2 (normal under 1.0) / ALT is 41 range 10-44 / AST 21 range is 10-40 / Alk Phos 106 range is 55-135 These are the best they have been in so long I don’t even know! He asked me this week to go get him some “crap shirts” and a couple of robes. The gauzes keep leaking through so he doesn’t want to ruin any of his “nice” shirts:) I found 7 and I’m washing clothes like he’s a newborn! Not to mention have I mentioned how much I love looking at him! He’s looking so good! It is also the best thing ever when he is blessing our food to hear him say: Thank You for the Liver! We thank Him all the time! Thanks will forever be in our heart!

September 17, 2017

Jeanie called today and spoke with Dr. Sonnier. For now keep Kevin’s prograff 2mg am and on. Fasting Labs Monday morning. No lasix for swelling until after they see him Tuesday in clinic. He’s still changing gauze frequently. About every 2-4 hours. His Tac Level went from 12 to 6.6. Tac is short for the generic tacrolimus which is prograff and that’s his anti-rejection meds. He will take them for life and getting the dosage level correct is what it’s all about. This weekend we have Tiffany and Bailey. My parents are coming with Maureen. Keith and Caleigh! So much to look forward to! And maybe some beignets to share.

September 16, 2017

Labs at the crack of dawn! Lol! And wait to hear what to do. At 3:30 Jeanie called. (Hospital transplant coordinator on call this weekend. She did the notebook education and tested us before discharge) She said Dr. Sonnier reviewed the labs today. He’s the surgeon on call this weekend. He said the prograff level is now 12.1 and kidney function is good at 1.0 and to continue to hold prograff tonight. Change the blue card from 4 mg to 2 mg 2 times a day of prograff. His liver functions are looking good too! We asked about lasix and she said since his prograff level was high they would not put him on it. She will see if the doctor wants to add it tomorrow. She did say all that fluid is completely normal.

*Start this after labs in the morning at the Transplant clinic.

September 15, 2017

3:30 Amy called and said hold prograff for tonight. Labs in the morning. His prograff level is high. They will call back tomorrow after labs to tell him how much to take and when.

-*-Just saw Briova is the correct spelling. And I have several numbers for them. I need to figure out which one is which.

At 4:00 am he woke me up and his JP drain had leaked the amount to wet his shirt … weird?

The wet stain is size of large orange to small cantaloupe. We have labs in clinic this am.

Weight

Wed: 166

Thurs: 164.2

Fri: 167.6

We are waiting for our coordinator to call with their thoughts. It’s actually Amy while Nancy is off through Tuesday. They said from the other day if he gains more than 3 pounds to call and it’s still dripping. With gauze on it, it is still soaking through the shirt. The incision was the problem the other day and for whatever reason this morning it’s one of the two sites where they pulled the JP drains before leaving the hospital. Just perplexing.

Coordinator called while we were still at Ochsner and said get to the nurse in the clinic to let her look at his drain site. His labs are good so she is asking the dr for lasix (fluid pulled) The clinic nurse Michelle sent us out w “abd” gauze pads and tape and gloves. These type are more absorbent gauze than what I grabbed at Walgreens . The draining is normal but she said keep it dry. For now we wait to see if they order that script. He does need to get rid of the fluid.

The Breova pharmacy called about his speciality medications prograff and cellcept. They will call every month before they are due and confirm shipment. It was 45 minutes today on the phone because it was first time set up. And the pharmacist had a chat about side effects and what to avoid. We heard it in the hospital but it’s ok to hear it again. Any manufacturing change they let us know because that could alter the absorption slightly. He said they monitor that but also let the doctors know if there is a change in manufacture so they can keep a close eye on the levels. It’s all about those levels. Always ask before starting any new medications because it could affect the levels. They are available 24/7 as well as the team of doctors we have here and in Texas. Avoid grapefruit and he said some sodas have grapefruit. It’s fine here or there but not everyday. Avoid blood orange things. Keep him monitored by the dermatologist because a side effect is squamous cell skin cancer. We’ve had him with one since 2011 so they are keeping an eye on that. Another side effect is the swelling in legs and feet. Especially it’s a side affect of cellcept. Normal. Walk. Exercise. Also it can affect blood pressure. We are currently monitoring that twice a day. No live vaccines. It was a long call. And it’s who our insurance uses to get his main meds so I listened. Kevin napped!

September 14, 2017

Noon

They populated the patient portal with the ultrasound results late last night. I sent them to Keith asking him what he thought they meant and he replied: that’s what doctors are for! They did say if it was “alarming” the doctor reading it yesterday would call our doctor and then we would be called. Nancy called and said the surgeons reviewed the ultrasound readings before the entire team of surgeons and were not concerned. The fluid was not worse. My thinking is the JP drains pulled that fluid out since surgery and the last of those was removed on discharge day. So that fluid is now needing to be absorbed by his body. The surgeon was reminding us yesterday that Kevin had all kinds of blockage in the old liver and now this new liver has great openings and is working to train the body with the better flow. His body is having to get use to absorbing that. I told our coordinator that I tried to interpret that language and it was good to hear they were not concerned. Ok. Whew. Fasting Labs tomorrow. Fasting labs Monday. Surgeon clinic visit Tuesday. Repeat ultrasound Wednesday. We can call with any changes or concerns always. *Nancy is off and she gives his chart to Amy until she returns*

September 13, 2017

One Week! It’s been one week since transplant. Dr. Carmody told me a week ago it would be like a roller coaster ride. Some ups and some downs. And sure enough there was a little drama today. Like the climb up the coaster to the first drop. So far it was not a huge drop after climbing up but a smooth turn. Kevin had that “leakage” last night then this morning he was swollen on his left side. (Liver is right side FYI) So much so that Kevin said he could feel it over the edge of his shorts. (I was like that is a muffin top!) But is it normal!? We called in early and they called us back wanting labs and a visit in the clinic to see the surgeon. He already has a scheduled ultrasound today at 4. We dropped Keith off at the airport and headed to the lab.

Dr. Carmody (surgeon who did his transplant) was actually there today and consulted earlier but once he walked in and saw Kevin he looked relieved! The look on his face after seeing Kevin is what helped me be relieved too because Carmody was just visibly relieved. He examined him thoroughly. Explained stuff. But he thinks it’s just normal fluid. Tracking to that spleen area. He doesn’t want to give him a fluid pill yet because it’s hard on the kidneys. He poked around on him. Touched around his scar. He said he was healing. He could feel that. I also showed him pictures of the leakage. He added some orders for the ultrasound. That’s at 4. He said, “look at him. He looks good. He walked in. He feels good!” I know when he walked out he was saying how relieved he was that it wasn’t a hematoma. |Ruth said that’s a blood clot after like a ruptured spleen. Glad I didn’t know that earlier:) | We did the right thing. Call. Wait for their instructions. Follow them. And I love that we got to clinic early from labs but they checked him in and before you know it the surgeon was hopping down. He got there before the labs could be processed! Our new transplant coordinator also was in the clinic room. Love that we got the surgeon today and another chance to ask questions to our new coordinator. (They rotate around so in clinic we could see any of them)

For now we have routine fasting lab for 8 am tomorrow but they could change based on today’s labs. Today was white count and chemistry. Not prograff level. His white count was elevated yesterday so they are watching that. Nancy will let us know today’s labs and what to do tomorrow.

Nancy just called. She said no labs tomorrow. If there is anything blaring in the ultrasound they would call the on call doctor and get us. But she will see it in the morning with the doctor. His whites counts went down. They are at 7 from I think 11 or 12 yesterday.

September 12, 2017

8:00 I ran to Hobby Lobby for a side table with drawers Kevin wanted by his comfy chair and got back in less than 10 minutes with Keith telling me when I walked in that Kevin’s incision has “leakage.” Kevin saw his shirt was dark (from wet not blood) and a trickle of wet. But it was clear leakage. So we sent a pic to Tiffany and checked the transplant notebook. Page 13. Call the on call coordinator. There is a number for Ochsner On Call and they get the message to the correct coordinator. He’s been “painting” it with betadine.

7:00 Kevin shucked corn in the kitchen and chopped us some green onions or scallions. (Somebody tell me what’s the difference!)

4:30 Nancy (new coordinator) called with new “orders.” She said Dr. Carmody reviewed the labs and wants to add Ursodiol 3 times a day. So I added it to the blue card. (We had this already from before transplant but she’s calling in the new script to Ochsner Pharmacy)

Kevin had a pretty good night. He called me for pain pill at 4 am. At least this time I heard it! In the hospital he would never raise his voice and just quietly say, “mom, mom…” he wouldd text. Turn on the light. Nothing. Call me or holler! I can sleep through a lot! He had fasting labs at the clinic this morning and we met with his new coordinator and the pharmacist. Keith dropped us off and we walked in. He ended up asking for a wheelchair because that was a lot of walking! After labs we went straight to the hospital Bistro for breakfast. He has to take meds twice a day and they are important to be taken at the same time each day. Other wise rejection could occur or some serious side effects. So they schedule labs around this time. He also needs to take with food so the cafe is close enough to eat then get back to the clinic. (He learned the hard way yesterday by taking meds and didn’t eat soon enough. Bad nausea!)

After breakfast we went to the clinic to meet his new Post Transplant Coordinator. Her name is Nancy. Her brother was transplanted a few years ago. She was so nice and very informative! She went over again what we had learned yesterday before discharge just to make sure we get it. For now they are keeping a super close eye on him. His labs. And they change the amounts of medications often. So we keep up with that blue card. When we come we bring it. He also takes his temp and blood pressure twice daily. We keep up with that in the transplant notebook and bring it to all visits. He weighed 160 pounds today. Normally he’s around 170-175. So that was a gigantic liver like the surgeon said. He had some elevated numbers from labs this morning. The prograff (anti rejection med) level will not be back until after noon. So once it comes in on lab days the doctors and team look at it then communicate with the coordinator (who is also a nurse) and she calls us with what we need to do.

We stayed in the room and then the pharmacist came in. She went over how important it is to keep on top of refills and checked our blue card with the system.

*i have better notes but since keith is here I hopped over to get my toes done! Going on memory:)

**I’m not leaving him alone for a long time.

***he has to be careful with potassium levels. They can’t be too high or it interferes with the medication.

September 11, 2017

Just typing that date I have to say We Will Never Forget!

3:30 Kevin is showered and in normal clothes. We are waiting on transport and Keith is parked outside. He went and got Kevin a push button recliner for the apartment that heats and we are out of here!!!

Pharmacy was in for teaching. We are very informed. Kevin’s list of medications are on a blue card. It goes everywhere with him. Clinic. Labs. Etc. She said NO HERBALS. NOTHING EVER FROM GNC. No GRAPEFRUIT. NO POMEGRANATE. Those interfere with the prograff level. And that keeps him from rejection. The cellcept is for life. (Because Kevin’s indication is PSC.) Baby aspirin is for life. Most of the meds have a stop date. It’s all on the blue card. No probiotic with antibiotics. So no florastor. If he forgets his 8 am meds the cut off time is 2:00 pm to take that dose. If he remembers after 2:00 pm she said skip the missed dose and take the 8:00 pm on time. If he misses that and remembers the next day call the coordinator. It’s all in the black transplant notebook. He will be on a steroid but they already gave us a taper off schedule. If it says stop on the blue card always ask the coordinator if they still want it stopped. Never stop a medication without asking first.

Lost all track of time. Kevin’s surgeon Dr. Sonnier and team rounded through. They are sending us home! (Nola apartment home) He told Kevin he got an excellent liver! They loved all the questions his sibs asked. Especially the roller coaster one. The NP kind of went over them again for this doctor:) Very busy. Patient education with the transplant coordinator. We went over every page of the black transplant notebook. No public places for 2-3 months. We don’t have to lock ourselves inside but avoid crowds. Be creative. Hit the parks at uncrossed times. Avoid malls unless it’s a non busy time. Same with stores and restaurants. Go when they are not at their busiest. She said DO NOT WEAR THE MASKS. They do not do anything to prevent catching germs. She said the paper ones are not designed that way.

Dietician came in too. She went over what he can and cannot eat. I knew grapefruit. But also nothing pomegranate. (I bet POM would not like hearing that!) She said they are popular now but a no for transplant patients. Heat all meat. Even sandwich meat. That was new to me. So she said just heat to steam in microwave.

9:30 Respiratory checked in. She watched him with that deep breathing devise and said he’s doing good and to remember to use it throughout the day.

9:00 am Melissa Transplant NP She checked in and said once the drain is out today he can shower and maybe go home today. We will see. She said Dr. Sonnier will round with her later today. (One of the surgeons who did his surgery!) At first she thought it was time for a routine ultrasound but then said it’s for 7 days after.

8:30 The nurse removed one of the extra IV’s. It started bothering him yesterday. They put several in before surgery. So many lines and now he’s losing them one by one. He still has one JP drain. It should be removed today. And the dressing on the central line can be removed later today.

7:00 Kevin got out of bed on his own and walked to the restroom. He actually has finally crossed several hurdles after surgery. Got up unassisted. Passed gas. Had a bowel movement. He also seems to be going longer between asking for pain management.

September 10, 2017

5:00 The Central Line was taken out. I would say not without drama. The nurse who was “pulling” it struggled removing the “stitches.” She had to call the charge nurse and she struggled removing them as well. But it was comical because she said I’m going to ask which resident did this and first say good job and then yell at them! Once she got them snipped the nurse really had an easy time. I was only nervous because it was a central line! And this entire process took 20 minutes. Then once the line was removed she held pressure on it just for another 20 minutes. He is so happy to have his one gone!!!

This afternoon we had family from Bossier drive down and visit only to head back in the same day! Greg, Patti, Ainsleigh and Carrie’s visit helped us pass this afternoon with so much fun! It was great to visit and catch up. Everyone was heading out that have been here except Keith. He’s in it until we say he can leave:) It was great having everyone. I was just telling one of the tech’s who all everyone was and where they came from. She thought it was great everyone seeing Kevin. I said yep: He is loved!

Physical therapy came by and took Kevin waking and he did 6 steps. He’s been resting a lot so that wore him out! They said walk him one more time today.

10:45 Dr. Mathur and Melissa rounded. He loved all the balloons. He asked Kevin what his favorite movie or character was. Kevin said Hulk! The doctor liked the Guardian of the Galaxy 2. They bonded over the balloons! (So Mam Maw Sheo did good!) The drain comes out in one more day. The central line will be removed today! All his liver enzymes look good. He answered all the questions and they both loved that the sibs had some:

Roller coasters yes but not anytime soon! Diet will be gone over in detail later with a list of foods he cannot eat. No football, lacrosse or any high impact. Kicking the soccer ball is fine just no aggressive attempts. (Or something like that) all the other questions he said could all change so the first 6 weeks for sure to be careful and we would know more later specifically.

He is doing great and they are happy with his progress. Could go home as early as Tuesday!

8:40 Jennifer said they advanced his diet and are discontinuing the CVP!

***Along with the self med box Kevin also was shown the other day how to “paint” his incision. In the medicine box are packages of large swabs. 3 to a package. He paints above it, on it, and below it.

8:15 Melissa the transplant NP was in and will be back with Dr. Mathur and is putting in a diet change with a pause that he needs to have a bowel movement. She was happy he was out walking yesterday. We asked her about the blob in the drain and it was just tissue. Not at all worried about it and said they can change that out.

Jennifer nurse: the charge nurse is trying to get that CVP monitoring discontinued

8:00 am Kevin has been passing gas! We got to face time Caleigh last night and she is doing great and even had some questions for us to ask the doctor because we didn’t know the answers:

•Can he ride roller coasters

•do we still have to eat “that sodium diet”

•They mentioned no contact sports and Cole and Kevin both were asking for how long? I’m like what exactly do they consider contact sports because I know they are going to want to keep kicking around that soccer ball.

•Tiffany wants to know:

•will he need antibiotics before dental procedures?

•When can he go back to school?

•When will we know if he is rejecting the organ? (I told her we have a notebook and some of these answers are probably in there. It’s in my lap as I type so am about to cuddle up to that good book!)

•When can he go in public places?

September 9, 2017

Cole stayed in the room with Kevin while I slipped out to dinner with family. We tried to go to Johnny Sanchez (Aron a Master Chef judge owns this) on a mission from Kevin who read the menu but it was an hour wait on a Saturday night so we hopped next door for pizza. He passed gas too! When I told the nurse she got happy! She told Kevin that nurses and moms love that news!

10:50 endocrine doctor rounded and said his blood sugars are fine. They always as a precaution check them all day because it’s normal to have high levels after surgery. But Kevin’s never really were so he’s stopping all day checks and said in morning labs if there is a concern they can address it there.

10:30 Dr. Mather (surgeon rounding) Charge Nurse Danielle and Transplant NP Melissa all came through. Kevin’s thump on the stomach sounded better. So he was happy with that. He said all his liver numbers were trending excellently. We had two questions.

1-why did they not need any pints of blood? He answered: we have really good surgeons! We all laughed. Then he said they try to do a bloodless incision. And they may have sent some of Kevin’s ahead and circled it back through. (?) Kevin’s asleep now and he’s my exact listener. I get it but then can’t really retell it.

2-What is done with his old liver? He said they send it off to pathology. They slice it up looking for any other evidence of anything that might have been missed. (I guess like underlying diseases.) We see those results in clinic.

8:45 Melissa the NP for transplant came in. She said if things go as well as they are he could get out mid week. 6-8 days is average stay from incision.

7:00 am

We are responsible for pulling the meds today. They pull about thee days and put in a box. Then we pull them for the times required and put in cups for today. They said have it done before the nurses change or something like that. So when they took his vitals at 4 Kevin woke me and said we need to pull the meds. I will do the blue card you put them in cups. Then we went back to sleep. The nurse came in at some point and was happy to see the meds pulled but she said we were early but it was all good. So far there have been WAY worse med scenarios that we went home with that I had to call my pharmacy friend to step us through! Take this without food and this with food but an hour before or an hour after. Overwhelming! But these so far are 6 am 8 am 6 pm 8pm and he doesn’t have any 6 am ones. And it’s mostly just for the first few months.

September 8, 2017

We ended the night a pretty hospital routine way. Watching Master Chef. I cannot tell you how wonderful it was for him to want his iPad and open it to this show. I’m not a big cooking show watcher. Like really. It’s stressful! But over the past 15 months I have loved watching him watch it and grown to be addicted to it rooting for our favorite chefs. And on the side learning a few random useless things! And tonight’s show pretty much had us both in tears so I can love any show that makes me cry!

10:45 we got the liver pillow and the blue card education for medication. The pillow can be signed and is used to press on his abdomen when he needs to get up. The blue card organizes the dosage of meds. We start pulling our own meds tomorrow. They check them all then he takes them at appropriate times. It’s to prepare him for taking them at home.

6:00 He is in a new room. It’s actually the exact same room we were in when he was here a couple of weeks ago. 8070 Transplant Step Down Unit. And we have the nurse who was our nurse when we were an almost transplant back in August.

4:30 We are waiting on a room in the transplant stepdown unit! They are currently cleaning it. I know the nurse we had yesterday told us about this bright bright r2d2 type light that cleans the rooms. They set it in different corners and places around the room. Not sure if it’s all rooms or ICU rooms. Sounded cool. So if we are ever driving over the Huey P. Long Bridge and see a light show from the third floor of Ochsner we will know another room is being cleaned!

4:00 the nurse removed his IV fluids.

3:30 we were given a transplant notebook by the liver coordinator. They will be back by in a few days to really go over it.

2:45 Dr. Jax removed one of the JP drains.

11:15 Samantha one of the social workers came by and checked on us and visited a while. They don’t just let you say you have support they want to hear the details!

11:00 endocrine doctor came by and is following his blood sugar levels.

10:00 Jasmine did a bedside ultrasound.

9:45 Dr. Marthur a transplant surgeon examined Kevin. He thumped his abdomen and said because it sounds like a drum he needs to pass gas. He can have liquids with bites of crackers otherwise if he eats he said it would come right back up.

7:30 Dr. Jax she said his A line can come out. Happy happy to lose lines.

7:00 am Kevin had a pretty good night. We slept well. Hospital noise is now white noise to us. And that’s huge considering how alarming and jarring it all was in the beginning! Dr. Hart was the first one in. (Caleigh’s tutor’s brother.) He is so nice. I feel like we are watched over so well.

September 7, 2017

*this place is so busy. I open a note in my phone. Start and stop little updates and when time will post them. And there is a window so we are being watched. And I can’t put a sticky note over it like my PC!

9:00 Kevin has had a monumental day! And my God has had a MONUMENTLIER one! I don’t know where the time went. The nurse today was so nice and talkative! We heard such great stories. Our NOLA Pastor and his wife visited and prayed over Kevin. We had surprise company! Pastor Pope and Mrs. Barbara hopped around the curtain with a Mickey Mouse thumbs up! And I hung up on Ruth jumping with tears to hug them both! Sheila and Mam Maw got to see him at a normal hour and Kevin realized for the first time their presence. Cole flew in. Tiffany and Grant and Bailey drove over. I’m hearing such great stories of Caleigh “Callanan” that we are all wishing we were her!

Kevin wanted the catheter out! So the nurse took it out this afternoon. And I looked at him and asked: is that allowed? Next thing you know Kevin is asking to have help walking to the bathroom! I know we get excited about our kids potty training but it doesn’t stop when they are two! Who knew it continued when they are twenty! One nurse said well you won’t go much because you haven’t had much it’s just the sensation from the removal of the catheter. And we step out. Walk in to see a great amount and hear his nurse proclaim well, you proved me wrong!!! It was the hardest thing ever to walk away last night leaving Kevin here. But I knew I needed some sleep. And I knew he was in such good hands. He had two nurses on it all night and constantly monitoring something. I am struck with such great awe as I see each and every line and tube and cord coming out of him. I see even more how great God is! He spoke and breathed and created, and we fill an entire hospital room with beeps and bells and machines and tubes and tubes and tubes and tubes and stand in awe of the great wisdom He poured into willing servants to invent and train others to use to give my son that most precious gift of life. I told a friend having Dr. Jax share her story with me earlier that she lost a brother and knowing his organs were donated gave them such happiness. I see now that new joy. I’ve focused on the sadness of the loss of life (which truly is very real) and not the joy and beauty God makes out of the ashes. Those mourning the sometimes unexpected loss of loved ones truly feel that joy knowing that a part of their loved one brought unexpected new life to someone else’s loved one. It is almost unwordable! And that’s not even a word but it captures exactly what I can’t word! I didn’t get too far out of my praise time today. I camped out on He is Elohim! One who is great! Mighty! Majestic! El Roi: The Strong One Who Sees! And all day as I looked at Kevin I’ve whispered to Him, Lord, I will never ever be able to look at Kevin without KNOWING You are Jehovah Rapha! I AM YOUR HEALING! When the nurse walks in and announces its time for your prograff (anti rejection meds) I told a friend it sometimes turns me into cement but I quickly have to say Lord I’m not going there. He then is my Banner! My explanation only here (so not contextually or biblically accurate) but to me my: Jehovah Nissi which to me I see when I’m deepening in trying to grab that worry I see His white banner just waving! Flickering ever so gently so it catches my peripheral vision. And it’s just such a beautiful thing. I Love You Lord! And I do lift my voice to worship and praise you and along with my voice I squeeze out every bit of my heart in adoration and love for YOU! Thank you Lord God Almighty for Kevin’s gift of life-his new liver!

3:30 Kevin was moved to a new room around the corner still in ICU just a not as much observed.

1:30 Caleigh texted and asked how Kevie was and … wait for it: does he have a scar!

12:30 Dr. Galati (Houston liver doctor) texted me to check on Kevin. Love that!

11:20 Debbie the physical therapist is in getting Kevin in a chair. They said they normally put them in the room chair but since he will be moving to the step down unit today she’s putting him in a wheelchair! Well, ok! (Me: he seems tired and I’m not sure he will sleep much in the chair but I get why they want him moving)

11:00 Daneeka the NP for transplant came singing in the room! She was happy and smiling! Jay showed her his blood sugar numbers and she was just so happy! They looked great! Normally patients need temporary insulin. He doesn’t need insulin. They will keep checking especially as he starts drinking and eating.

10:15 Jay started removing several of the lines. Kevin is resting.

10:00 Dr. Carmody (surgeon who did the transplant and spoke with me before in Q&A) stopped in with his team and said how great Kevin did. He showed him where to expect to be sore. He said normally they pull it all down but he said your big ole liver (and spleen) had us pull down and up and to the side. He said it was tricky getting in there but once they got the liver out there was plenty of room for the new one. He asked us if we had any concerns. We are just amazed! He likes the blood pressure below 160. It’s about 140 now and he may give something temporarily. He said he going to get the lines out and hopefully move off of this floor later today.

The social worker Samantha was rounding with that team and stayed back and asked questions. She asked Kevin is he having and stress or depression and how he handles everything that has happened. He said prayer. She asked me too. I said lots of prayer and support from friends and family. She asked how we got through it and I said it was really a calming and exciting day. I completely trust this place. I know they know what they know. 🙂

9:15 Food service brought in a tray of liquids! Yellow Jello. Apple juice. Lemonade. Broth. Coffee. Kevin is like. Is that mine? I didn’t order it.

8:45-9:50 Jordan is doing a bedside ultrasound. I am actually seeing Kevin’s liver and blood flow. And mostly saying I’m seeing it because the only thing I’ve ever personally seen on an ultrasound were my babies! She said we will be seeing a lot of them and to get use to it! Love that. God is amazing! In case I haven’t told you lately. She hopped out to check with the doctor and hopped back in a couple of times to do a few more images.

8:30 He asked for a fan after I told him the room is as cold as the thermostat will let it get. |Loving my blanket Michelle! And socks Rebekah and Melissa!|

8:15 swallow test. They let him take three teaspoons of water. Then he sipped from a straw. This is preparing him for oral pain meds.

8:00 am It is a small world. Caleigh’s math tutor, Mrs. Bloodworth, and former math teacher at Doerre when she heard we are coming to New Orleans texted me and said her brother was there! Well, this morning in walks her brother ~ Dr. Hart the Executive Vice President and Chief Medical Officer of all of Ochsner! He was so impressed with how well Kevin looked! And he said he’s seen a lot of patients after transplant. Kevin talked to him. He gave us his card and cell number and said to let him know if there is anything he can do. Then he hopped out and spoke to all the staff around Kevin’s room.

7:15 am Kevin asked questions about his surgery. Like the timeline of things. How long it took. He didn’t know we were in at all. He spoke just a little then asked for pain meds. He’s at about a 7. Jay is today’s nurse and he talked to both of us asking about Harvey and our “back ups” and experiences here. Kevin is resting. He looks so good. He did tell me “his abs hurt.” I bet so! |Keeping the cell phone usage to a minimum while in ICU.|

6:45 am the tube is out. Dr Jax talked to me on the other side of the curtain while the team of people removed it. She was a sweet sweet doctor. Somehow I told her I just feel for the donor’s family. She said if it helps when she was younger she lost her little brother and they donated his organs and if it makes me feel any better it really helped them. From a donor family perspective.

6:15 am We went to the apartment last night after getting to see Kevin for about 10 minutes with Keith, Aunt Sheila and Mam Maw. Brian his nurse let us all in. It was 2 am before we pillowed our heads. But Kevin was able to communicate with his nurse and move all his extremities when asked. We didn’t see that but he gave us that update. Kevin didn’t know we were in the room last night. This morning Keith dropped me off only one can be in here during shift change. When I walked in Kevin’s eyes were on me for a minute. I gave him a thumbs up. He’s intubated (has breathing tube in) but is pretty much doing all the work. His nurse said he’s hoping to get that out before he goes home. He said Kevin had a great night.

September 6, 2017 We Got The Call!

I will try to put bullet points with time below throughout the day:

10:04 Dr. Carmody (surgeon) just came out. Everything is done! Kevin is doing great! He will be in recovery for an hour and a half then we can see him. They will take him up to ICU. They said he will be asleep all night. He said no blood was needed. Usually in the nation about 7 pints are needed. None needed for Kevin. He said at first he was worried about the case because Kevin has a huge liver and spleen. He was concerned about that spleen bursting. He said No Contact Sports! He said he’s producing bile and all things look great now. He reminded me from earlier that transplants are like a roller coaster. Up and down. All is good now. But things could change but they are on it. And … I hugged him!!!

9:43 4 hours and 7 minutes in

What I am forever grateful for is precious friends and family reaching out to us. Every text and verse and prayer has been our encouraging strength to help us stay strong. I just told a good friend how we had church in the waiting room earlier. The college in Tennessee Kevin attended sent us a link to join them in a service live link and they prayed right at the beginning of service. (Keith and I held hands |i know in public even!| and prayed and listened to that service with our Bible open and hearts so full! Our church here and in HoUSton (Harvey font) prayed and beautiful people sent me images and words I will never forget. Jane sent every dr and nurse in Methodist that she told about Kevin today. All this I slowly sent to Kevin. I know I have his phone but I started it with while you were out: as I type this I’m listening to a huge hug (!) a friend sent me a gift in an email of a beautiful Christian album! I’ve been meaning to download a while back. How she knew!?! We are still waiting out the second half but am joining so many in giving thanks and praises to God and His precious healing and every present hand!

(Church link http://Faithforthefamily.com )

*not sure if they archive it but want it for Kevin for later.

8:50 Dr. Sonnier just hopped out. He wanted to update us as well and let us know we can relax. He said he’s doing really well. He and Dr. Carbony both worked on him this part. He’s going home while Dr. Carbonay and another finish. Keith and I both thanked him so much. I had tears. The surgeon gave me the BIGGEST hug!!! I got to hug Kevin’s surgeon!!!! Whew! Sooo thankful and blessed for the great knowledge and wisdom our God gives them!

8:44 pm Kaylah the nurse who updates us just came out. She was ALL SMILES! She said the old liver is out. The new liver is in. They are letting it profuse for 20 minutes or so while the team takes a break. Someone is watching him for bleeding. All is well so far. She did say that she could tell us that his liver weighed 71/2 pounds! And it was the second biggest liver she’s seen! And she feels better for him already! Next step is connecting the bile duct.

5:45 Kaylah the nurse from the operating room came out. It has started. Incision was made. She said we are in it for the long haul! I am so happy to hear it. I told her I needed someone to tell me like by standing on their head THIS IS THE ORGAN!!! She just smiled. She said next time they come out will be when the old organ is out and the new one is in and whenever the surgeons need for her to update us!

5:00 the coolest thing. I was praying through a prayer a friend sent and in the middle of that prayer Dr. Carmody came by and said “we are still waiting on the organ to get here but I’ll come out and talk to you in a bit: give me 6 hours!” How cool was that! He’s seen me once. Recognized me in this mass of surgery waiting room and told me that. I soooooo wanted to go chase him down and ask: so. This is happening?!?!

3:15 I took this picture (will try me best to insert it here or above post!) the nurses and anesthesia teams came in to get him. He had just hopped down to the restroom. Isn’t that they way it always goes. Leave to go potty and the food arrives! So I got to chat with that great team. They are first class. I know I asked them over and over if they saw the organ. And they were wishing I would stop asking cause I kept rewording it to be sure they knew my meaning! As best I can tell the nurse said the procurement team has the organ. They said it is a good one. I’m just keeping it a little back because we know things can change and they can stop the surgery for anything. And we would be fine with that.

3:00 I’ve still been back here. Kevin is prepped and ready. I do know they haven’t laid eyes on the organ yet but on paper and all they seem excited about it. Anything could call it off. But for now it’s on and we are in pre op waiting. Pastor Jayme came and prayed over Kevin and visited a while. Nice distraction and fun. We are so touched for the time this Pastor and church family has taken to pray over Kevin! Keith just landed and is ubering his way here.

2:00 still waiting

12:00 I am now back in the room waiting with Kevin. He is ready.

11:45 Dr. Carmody took me in a room to tell me what he knew and gave me ask questions. Once he said he knew Dr. Ghobrial and Dr. Galati I breathed a sigh of relief. He asked about Houston after Havey. Was encouraging us that we will come back stronger. He came just before Katrina here. I do know he said they have not seen the organ yet and that the donor was standard brain dead but was high risk due to blood received. He wasn’t concerned about it at all. More stuff he said. Will add later:) He mentioned he would try to connect bile duct to bile duct but we needed to know that might not be a possibility.

10:36 They called him back in OR prep. The nurse will call me once he’s ready and I can go back.

10:30 I called Shelly and once she answered they called him back.

10:00 am Shelley called. If we haven’t gotten called in 30 min call her. Timer is set.

8:42 am we got THE CALL Kevin is Primary

6:17 am we got the call to officially be NPO

12:01 am (midnight) we got the call to be back up.

September 6, 2017 12:06 am

Just got called for back up to another center. Considered high risk but only for +CMV {which she said most all people walking around are} and the fact that this donor has received a lot of blood. It’s a great young liver. No social history. No fast yet. No time set yet. It’s early on and we will hear something tomorrow. Debbie is the on call coordinator.

We had the best visitors come through on their way back from a family wedding: The Sargents! We are blessed to be so loved and cared for! We had a great time showing them our little world and catching up with them.

They placed the organ Sunday night for the last organ he was back up for. It was probably my first self inflicted anxiety or panic attack. And really it’s just insane. I’m a believer. I love the Lord! I trust Him completely. And family was in. We got a call in the while in the French quarter and it was just so exciting. Hope. Expectations. Sadness. So many emotions running through my head. And I know he was getting hungry the next day once he had to be NPO. And I expected that we wouldn’t get called off until early Monday morning like last time. 5 or 6 am. Why I plant that in my head I will never know. But I did. And pushed out figuring out what for Kevin to eat once he could. Hoping it wouldn’t and we get that back up! So at 1 am Monday when they called it off. Kevin wanted NOTHING in this apartment. So me and Cole and Cal went with Kevin to forge for food. Nothing in our area was open. Then the internal boiling of my insides started happening. Like telling myself why did I not plan better. Why are we out this late! And I circled who knows where trying to find an area closer to late night college kids or interstate travel. All the while the kids thinking I knew where I was going. Then Kevin saw an IHOP. And that’s actually what he was wanting. But once we got in one of the waitresses smelled like cigarette smoke and normally I can handle that but mix that with boiling innards and enter mama nausea. Then just sitting and trying to be fun while the entire time I’m thinking how sick I might be! Yuck! And then come the emotions. It sunk in as I looked over the table at Kevin. The restaurant was starting to populate with college kids. Nice. Mannered. Like they had been studying or just out having fun. Seeing clumps of them out and being normal and just having heard Kevin say something like how weird it will be to be back in college. And thinking about the donor and the family. And the family that received the life gift and how happy they must be. Yet how very emotional I was. How Kevin handles nausea so strong and well, I will never know! I almost called Keith to come pick me up! But laughter, and hearing what Caleigh thinks a gap year and a leap year are plus deep breaths and constant inner cries for help from my Lord settled me down. I realize I’m a basket case. And if somehow I can remember IHOP is open all night I don’t have to wonder what Kevin will eat! But I may never know what he wants. And after being NPO (nothing per oral) all the while then I will do whatever it takes to get him what he wants! (And the fridge has normally things he will eat!) Cole was the best after it all. Before I went to bed he wanted to tell me goodnight and he gave me the biggest hug! We couldn’t ask for better love and support and He puts them right in our path no matter how far out of the way they had to go because of Harvey to get in our path!

September 1-3, 2017

Keith and Cole and Caleigh got in late Thursday night! They went back and forth if they were coming due to I 10 closed because of Harvey. They ended up going practically to Shreveport and down 49 and about 3 ish hours added on! But it was the perfect long weekend for everyone with Cole out Monday and Caleigh actually out until Wednesday. Sheila Roland and Justin hopped in as well for some of these days. We had a blast with them. They all got to got to church with us. And as we were eating in The French Quarter on Saturday we got called for Kevin to be a back up for a standard brain dead donor. The primary is at another facility. He was still able to eat and drink until Sunday at 3. The surgery for the primary is after midnight so we should hear something in the middle of the night or early morning. We really don’t go a week without something happening here.

August 31, 2017

Labs and Clinic visit with Dr. Tyson (Dr. Galati of NOLA) She was happy to see us again. Hadn’t seen her since evaluation. She talked about how many back ups we’ve been and discussed that time he was primary. She said she knows they want to get Kevin transplanted and hears his name all the time! As discussed before being discharged last week they want him to rotate antibiotics every two weeks. Taking one per day between two weeks of the augmentin then two weeks of Cipro. Switching on September 3. We go back to clinic visits and labs every two weeks seeing her NP and then she wants to see Kevin once a month. But like I was thinking she said she hopes she doesn’t see us again:)

August 28, 2017

Praying and praying for all those in Harvey’s path since he closed schools Friday and all this week. We are keeping updated with Keith and social media and it’s heartbreaking. We are not there but feel like we are. It’s just all so weird.

Jaimie sent this today:

He is technically # 6 on our list today. However looking at certain factors, he could be #3.

August 26, 2017

9 am labs

1:00

Hospital Liver Coordinator called. His white count is higher than previous but still low. His liver enzymes are a little higher. (Reminded her dr sad stop Imuran) Not worried about it. Didn’t check amylase or Lipase. Wanted to know how he was doing. I said he’s eating lunch. Doing ok. Just checking on him. Said she hopes they get something soon for him.

So nice of them! Love that they called to check💚

Hospital Stay 12 (First Stay at Ochsner) admitted August 23 to … August 25!

August 25, 2017

Robin is the nurse again today and Hilary the NP. His MELD is a 25! Wow! That’s the highest he’s ever been. Most of the numbers stayed the same for calculating it. The INR was elevated so they think that’s it even though they do not know why nor is it a concern for them. His Lipase is lower too (381 from 500+)so that’s a very good thing. That puts him one step closer to eating real food.

Kevin wanted me to call Jane and let her know it’s a 25. I also ran everything by her as Houston Transplant coordinator I wanted her take on what offers to accept and all. She said on the phs donors stay away from West Nile, Hep C, toxoplasmosis, (she can’t imagine they would offer him one with any of those) … all other things she said are treatable. She is going to capture his high MELD. She said every time it goes up they can capture it. And to not be concerned about the INR. It’s a sensitive test and is sometimes high when it reads low. Creatinine 0. 8 Sodium 135 INR 2.5 BILI 7.3

We had company visit! Bill and Debbie and my friends Jeff and Michelle and Kella on their way to PCC. It made the morning pass so quickly! Then it seemed out of no where they were fine letting Kevin go to the apartment. He’s on antibiotics. (Will switch kind every two weeks) Has pain meds if needed. They gave him a Vitamin K shot for the elevated INR. And they want us to have labs in the morning and to be seen next week by the NP with labs again. Before I knew it after Kevin ate his first real food for lunch and did fine we were discharged. Harvey is looming in the gulf and we are praying for those in this storm’s path to stay safe. We also pray that the next hospital stay is the liver transplant! I am amazed that the wording of Kevin’s MRI/MRCP said “inflamed pancreas” which is not officially pancreatitis. The wording said no evidence of cholangitis or pancreatitis. Just inflamed. This keeps him on the list. He was temporarily on hold within Ochsner. Not with UNOS (united network of organ sharing). Such a praise! I’m melting into this place as laundry is going and we keep most of the bags packed for “the call!”

August 24, 2017

Last night they moved us to the transplant floor in the West wing. So floor 8. (That’s the 5th room of the day if you count the “parking spot” they pulled his bed into after the second ER room as we waited for the MRI/MRCP yesterday! It literally looked like a parking lot but with curtains hanging from the ceiling for yellow painted lines.) It was after 9 pm and I was so ready for a shower and bed and when they came into move him they startled me at first because they used “offer” words like primary and orders! But they were in hospital lingo with floor and area terms which at one point I looked at them and said are we getting an organ!?! Then they saw my face and explained no. A bed opened on the transplant floor! And it took until after 11 pm to get to where we are now. But the room is bigger! I lost my excellent view of Old Man River but it is still a pretty view.

This morning his nurse Robin and the NP Hillary gave us some lab results but still no word on the images from yesterday. Personal best as I joke in MELD at a 23 and a BILI at 9.5. We all joke about how only pre-transplant patients celebrate getting sicker. His Lipase went from 500 to 966 so for now still NPO. He did say he had a bit of a headache.

Asia is the social worker for the floor this week. She came in as happy as ever and explained how the rounds work here. She said they all come around at 11 and round in a group: surgeon, hepatologist, nurse practitioner, social worker, etc. She said she stays around after in case there are questions we want to ask or things we didn’t understand. Currently letting Kevin rest. His pain has been being controlled and he hasn’t had to ask too many times for pain meds. That’s a praise!

Jaimie sent this message in the portal this morning based on labs:

“MELD today is 23. He is now listed with that MELD of 23. He is #7 on our list officially. He could be #3 based on certain factors.”

11:30 Still no images. Dr. Lott (not Latt! I try to see their name tags because we don’t know anyone by face and I haven’t learned the scrub color system!) and NP we’re just in. There was a problem with getting them. She said should have them soon. Like in 30 minutes. So we will know if ERCP is happening soon. If not he can have liquids. But since Lipase is still elevated if pain then back NPO.

12:15 Ok. NP Hillary said they finally saw the images. He has no active cholangitis and it even commented no active pancreatitis (however we know labs tell us otherwise) so no ERCP Needed. The telemetry heart monitor he’s wearing since ER (protocol) that he hates can be removed! He can have broth! And she said they have laptops to use if we need one. Cool. (Just watch as he adds liquids if pain persists to back off)

1:30 Here is an answer to prayer about being away from home and my getting food! Ochsner allows family to order off a similar menu and it’s delivered to the room! No stashing bananas here! With Tiffany at Tx Children’s and friends and family always hopping in I never had to worry about how I was getting fed. Hospital cafeteria food is better than no food. Any. Day.

Ochsner Hospital ER

Kevin awakened me at 5 am. He went to bed last night with pain meds. He said he hadn’t slept all night. So we made a quick plan to head to ER.

7:00 am zofran and dilaudid given.

8:30 Dr. Voigt (ER dr) said the amalyse/Lipase number was elevated. Waiting on transplant to chime in.

9:00 Hilary NP for transplant team said they will probably admit him. Is reporting back to hepatology for what they want to do. His MELD was higher than when he came in. Like maybe a 20 or 22. She said they can capture that one.

9:10 dilaudid and zofran

Orders: antibiotic. Fluids. Steroids.

BP 108/72

9:30 Drew cultures

10:15 a message from Jaimie the transplant coordinator here:

“I will cancel the appointments. His MELD is 22 today. This makes him #8 on our list. Given factors of other candidates, he could be #3. I hope he feels better. I might come visit ya’ll later today and give you the powerpoint. I have meetings til almost 2 I think though. If not, I’ll try to make it to see you tomorrow— if you’re OK with me stopping by, let me know.”

11:15 NP Hilary and Dr. Latt stopped in. They moved him to a quieter room in the ER waiting on room to open. This liver doctor we haven’t met but he’s on the team. He ordered an MRCP/MRI to look at the ducts. He may do an ERCP just to stretch things out. He said he thinks Imuran is causing Kevin’s pancreatitis. He said its unusual for cholangitis to. (I would say Houston usually goes here too but always circled back and said yep. Gunk and cholangitis causing Kevin’s pancreatitis) He will speak to the team about discontinuing the Imuran. We mentioned he’s been off it during hospital stays before. But he’s taken that since diagnosis in 2012. Dosages have varied. His numbers are greater than 500 so for now they are holding off on transplant for a couple of days. He’s not on hold on the main list just the inner list here. (Just to me and Kevin this doctor reminded us of Dr. Khan who use to work in Dr. Galati’s office. Gave us “information” and was knowledgeable. But not sure if we connected completely)

12:30 They moved us to the MRI/MRCP waiting area. He has a room on the 10th floor after this so I’m following him around with his back pack and my hospital survival bag. Once we get to the room we have “stay” bags in the car.

2:00 in the room 1061! Took an oxycodone. And they will alternate with dilaudid to control his pancreatitis pain.

We also did get a visit from Jaimie our transplant coordinator! She is the coordinator for out of town listed patients. So she can relate to us really not knowing anything about the city or hospital! She gave us GREAT insight of listed and procurement details. She also gave us good finds for around town from groceries to newspapers. Things to do and things to stay clear of! She reassured us even more about the PHS donor offers we may her in the future. Some of those organs are better off than the DCD donors. Anyway, how amazing that she stopped in. Jane in Houston did that too when we were in the hospital or she would always call and check on Kevin. These people are amazing! I’m alone here and if I thought about it long enough I could cry but the staff are so personable. Even walking to find coffee downstairs (every machine on all the floors we were on are “broken” which I found out today they just all need refills) there are friendly smiling faces everywhere. I feel bad for my first thought of this place when Dr. Galati ever mentioned it a few months back! :0

7:00 Julie NP from transplant came in. She’s on through the night. Super nice and friendly. She examined Kevin and went over all that is happening. So far still waiting for picture to come back.

Tuesday August 22, 2017

Answers to questions:

I noticed labs were cancelled for this week and wondered why. She said that after seeing him they said monthly labs and visits to clinic every two weeks until he sees Dr. Tyson. After that she will decide if clinic visits can go to monthly.

I asked if she knew our current place on the list. She said he is #10. And she could see some of the ones above him are pretty specific type needs and she reminded us that Kevin is a “better surgical candidate” than most.

I told her we turned down a back up offer and asked her all about that liver. She said the primary center actually accepted that one so it went to them and had we accepted back up we wouldn’t have gotten it. I told her it was an emotional day and really we need more information and clarity on those PHS donors. She said this one statement that gave me a huge sigh of relief: Ochsner has a Zero disease transmission rate with those donors and typically those donors are very young and healthy. Anything they tell us during the call for an offer is treatable on a temporary basis. I asked all kinds of what if type things especially after reading up on different diseases that make a donor PHS and said would we want to be careful with Kevin if they stage of the disease was in one that could do more harm to him as an autoimmune patient. She said the procurement surgeons decide when they see the organ and once they test it if it’s viable. So I’m assuming that if the “disease” was in rough latent stages the organ would most likely not be transplanted. I told Keith it’s like my mind goes to some dark alley with surgeons saying well here’s an organ let’s not waste it. When actually they never do! Of course they are only going to transplant what is transplantable! But I’m a step away from that back alley mentally! I’m just not medically inclined enough.

I asked for further clarity about different centers and back ups. She said Tulane is a transplant center. So the time we were back up for a different center she said it was fine for us to be at the apartment. We were close enough and they do that all the time.

It was so good to talk to her. She is arranging a meeting time with us when we come Thursday for appointments. She has some good reading material which goes into more detail for us she said that would help us.

August 20-21

School started today! Keith and Caleigh face timed me and I got to ride along with them to drop her off and pray in the carpool line! Kevin has been in some pain the past couple of nights. We are watching him very closely. I don’t even want to count how long it’s been since his last stay! I love how the Lord is keeping him stable while we wait.

Sunday morning he awakened me at 3 am having not slept at all and was needing nausea meds. Then at 7am I was awakened by a call from a coordinator with a back up offer. This one was a PHS (public health service high risk) the donor tested positive for syphilis. And we turned it down. We haven’t had one of those types yet. We haven’t said no to any offer yet. We are allowed to. We don’t lose our place on the list. And in church yesterday Pastor Jaime spoke from Psalm 78 how good God is and yet how quickly people forgot. And this verse hit me: “Yea, they spake against God; they said, Can God furnish a table in the wilderness?” ‭‭Psalms‬ ‭78:19‬

I don’t know if I can explain my heart here but at 3 am that was one of those cry out to God moments again for Kevin. I absolutely don’t know what else to do when he’s experiencing such symptoms and I just go back and climb in bed??? It’s a struggle for this mama! So sitting in the church pew it hit me. Did I doubt Him? Was this the table He was spreading in our NOLA wilderness? Even though we made the unified decision with Keith, Kevin, Tiffany & Ruth… and had peace about turning this offer down, I was taking it all in on the pew. I was feeling for that donor and ended up an absolute mess. It’s never good when your tired and weepy. Pastor’s oldest son and his wife prayed with me across the pews after church. I wasn’t close enough to the exit to get out without making eye contact:)

I need to call our Houston coordinator and ask random questions we have. I feel like we made the right decision and we were tired and it’s so hard to see Kevin hurting. I know that there is NOTHING to hard for God! I am asking Him for a pristine liver for Kevin and complete peace about the offer if it’s anything but. So many are praying this for us. And after a good night’s sleep and several calls and texts from family and friends I’m not as mental. Or am I!?

August 17-19 Back Up Again!

Kevin had a rough week. It seemed like maybe he was brewing another episode of cholangitis that may need a hospital stay but it kind of passed. It turned into a three day back up of which we are forever grateful! (It’s why we are here!) This time around they called Thursday mid afternoon offering us to be back up to a standard brain dead donor. They said continue to eat and drink because they didn’t know times yet and it could be tomorrow. Friday at 4pm rolls along and we still haven’t heard another thing so we made the call just to check. The coordinator said still no news and that because they were one of the earliest to know it’s a longer wait because they are trying to place all of the organs from this donor. That made complete sense. She gave me the name of our on call coordinator and then said she was on for the weekend so we at least knew who to ask for. By 5:30 pm the on call coordinator called and said the donor surgery starts at midnight so Kevin cannot eat or drink from that moment on. She also said this organ is at another facility and we could “wait” at the apartment instead of going into the hospital. They would call us if we are actually needed since we are 30 minutes away or when we are cleared. I asked since it was at another facility didn’t they want a back up at that facility? She was like oh no we know where Kevin is in the line and he’s the back up…and we want to get that kid transplanted! Well ok! I’m literal as well as visual so I’m actually needing to call our actual coordinator and fill in the blanks in my mind here! (Because my mental confusion can’t hang with with the rapid information they give in the phone call and we’ve hung up before the fog lifts!) We always learn new information with each experience. So we waited for that next call… we’ve been working on a 2,000 piece Star Wars puzzle so we actually did that between family calls (we watched through face time Bailey eat some green beans!) and watching videos of Caleigh’s exhibition Keith sent from Friday family Fudrucker band night.

I will say we are tired. And I can’t say we have done anything physical but the mental and emotional side is draining. As much as I try to dismiss it. It just is. At 5 am Saturday morning we got the “we are cleared call” and that means Kevin can eat and drink because they placed the organ. Last night he said let him know when they call thinking it would be earlier in the night because he said I want to wake up to eat! He went to bed hungry. But by 5 am he said he was just so tired he would eat later!

This is normally an emotional time of year for me with all the back to school happenings. I have so many friends sending kids to college, I’m sending a kid to college again Monday! Cole starts Grad school at UTSA (Univ. of Texas at San Antonio) and Caleigh starts HIGH SCHOOL! I cannot tell you how weird it was to see in the video Keith sent of HER marching on the band lot to an actual set and pattern! She was my number one band fan when we followed Kevin’s tuba playing for 4 years at Oak. It’s just so weird. It shouldn’t be her. But it is! And she LOVES IT!!!! And that makes me so happy! I love when she face times me after practice and the happiness just exudes! I’m thinking not me. No way would I be happy after hours outside in the heat! I’m also not musically inKleined:) I would have a heat headache and not be friendly!

Kelly called earlier this week and asked who is making the pancakes on Monday?!? I love how different people in my life know me so well that they are thinking of us at this time in ways like that! So, I prepped Keith on this! I said just be glad you are not making a panther paw! I said she is the Hurricanes! You can make a mess of it and say GO CAINES!!! (School is named after former superintendent Jim Cain so I will forever struggle with which spelling of Cain?! *Cue the veggie tales singing the homophone song here!) But I said for the “cuteness factor” keep them round but when you “plate” them, swirl the syrup around the pancake to make it look like a hurricane! (Here there is even greater discussion as to which way the hurricane swirls in the Northern and Southern Hemisphere I learned on a neighbor hood Facebook group {!} WAT?!)

I’m thinking I’m picking up Blue Apron lingo here! We have now had two deliveries and it has been the best thing! So far only one side dish we both decided we would never eat again but everything else has been delicious! (Not a fan of Korean rice cakes with “insert weird mushroom name here!”) It takes up time and is right up Kevin’s foodie alley! Now to feed that boy some breakfast!

Thursday August 10, 2017

We got a call last night to be the back up for a standard donor with the organ coming from Florida. OR 1:00 pm today and surgery 2:30 pm. He already had labs and a doctor appointment so we were heading there anyway around that time. It was called off because the liver didn’t look good. So he can go back to normal activity. And that equals eating and drinking. This time the wait didn’t really happen since it was called off before the wait. But we did get ready. I have a bag by the door now and am thinking it’s not getting unpacked. That’s 3 calls in 9 days!

Finally, I had a cool way the Lord met a need today. We really have all we need. The basics. We are fine. I was missing a clock or two because I love them and they are everywhere at my house in Houston and a blanket or two. Well, a drawer in the dresser in the furnished apartment was broken. Came that way so — we turned it in and thought they would just come repair it. Instead, in they come with a complete dresser! When they left, I was putting my stuff back in the drawers and found that one drawer had an alarm type clock in it and another drawer had this perfect white bed spread type blanket! He met both of those random wishful needs for me and it made me so thankful to know He knows; He cares; He sees; He provides.

Tuesday through Friday

Alex visited and we had such a good time with him! We visited the World War II museum then stayed home a couple of days. Kevin wasn’t feeling great. His BILI was high again. He was “back up” again so couldn’t eat or drink but today before he flew out late we were able to ride on the Natchez Steamboat and take him to the Cafe Du Monde in the French Quarter by the loading dock for the boat tour. It was perfect for Kevin! He could sit inside and take in the scenes of the Mississippi River in the air conditioning. We played a lot of games and watched some movies. And poor guy. When I hopped out to tell him goodbye I was crying before I got around to the curb. I got back in the car and Kevin just looked at me and said, “He’s not even your kid!” It could be a mix of him leaving here and the fact that I know he’s leaving for college next week! Just trying to live that life verse of mine. Crying when people cry. Laughing when people laugh! Romans 12:15

Monday, August 7, 2017

Kevin wasn’t feeling great early Sunday morning. He had to take nausea meds and was about 99.5. He held his own and so far has rested and stayed out of the hospital. We’ve been absolutely blessed by so many texts, calls, packages and encouraging words! We feel so loved. Kevin met one of my Moms In Prayer mom’s earlier today. Kate treated us to breakfast in the Garden District. She got there on a street car! We ate at an authentic New Orleans lunch counter. Kevin thought that was cool. Our first blue apron arrives tomorrow for my foodie son! We are anxiously awaiting his great friend Alex Stayte to get here tonight and stay through Friday! We had a nice weekend with Keith and Cole and Caleigh who went ahead and stayed since they were pulling into the parking lot practically once we got word Friday that it was a no go. It was so good to have them around!

Also our transplant Coorinator sent us an explanation of DCD donor. We had a copy of the slide PowerPoint but it didn’t make it to NOLA. All the other books did. Here is how the slide we saw in transplant evaluation read:

“I tried emailing the powerpoint but the file is too large. The slide for DCD says this. ‘Recovery surgery harder on liver, but donors younger and healthier on average than other donors. Excellent outcomes in large series at Ochsner. May be offered before you get as sick. Survival very similar to livers from other donors.’ Basically, DCD stands for donation after cardiac death, these donors typically suffer from irreversible brain damage but might not be deemed “brain dead”. The donor’s living will or family will decide to withdraw life support. Once life support is withdrawn, the doctors wait for the heart to stop. Sometimes, the heart doesn’t stop and in this case the liver transplant will be cancelled and you’d be notified that “the donor did not arrest”. Which I think happened in Kevin’s case this past weekend. The slide says it’s harder on the liver and this has to do with the amount of time where the heart isn’t beating/perfusing vital organs. Ochsner has excellent outcomes with these types of donors and these are usually what is offered to recipients. As of right now, Kevin (and family), has agreed to accept DCD offers. This makes his offer pool larger (meaning he’s more likely to get offers more often) I hope this information helps! Jaimie”

Friday August 4, 2017

***Thank you for your prayers! It’s been an emotional day. We actually just received word that the transplant will not happen today. We continue to wait for His timing. We know it will surely be very soon! “But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.” Isaiah‬ ‭40:31

*I sent this explanation to a friend to explain more and will paste it here.

A more detailed explanation would be that the donor was a DCD “donor after cardiac death.” It’s 5 minutes after support is taken to “procure the organ”

This is unfortunately and fortunately what can happen. I know many things can stop the process. God has other plans. He has a different donor still out there! He’s in completed control! We can only TRUST Him. Only He can guide and lead in this way.

The surgeon was just in. Explained so much. Wow! All the more in awe of God and how anyone gets transplanted! It is a higher risk of being “called off” due to the specific requirements for organ procurement from this particular type of donor.

We. Got. The. Call!

5:47 am we heard from Alitza the transplant coordinator on call. She had an offer for us! She said he is the primary! I was awaken from sleep so it took a second for it to sink in. But she said at first we needed to be at the hospital at 7 and that Kevin could eat something light if he ate this second. He ate some applesauce.

7:30 admitted super nice lady. Came out and gave us both hugs.

8:30 in a room getting ready for surgery. Nurse is Janet. He’s having labs. Tests. And more tests. Janet said the times are these: 4:30 in The OR and 6:00 Cut time. Also she had to remind us that anything could happen. Even once he is under the surgeons could decide the liver is not a good one so it could be cancelled. We completely understand this and have it always in the back of our minds. We know it’s His perfect will.

9:30 She needs his advance directive from Methodist.

Room 1047 D elevators

Nurse talk: she’s been a nurse for 30 years. Janet. Her son was born on the exact same day as Kevin. She explained so much! Pain levels after surgery. Specifically to let them know if there is severe abdominal pain. Normal pain level should be between 0-6. He will practice with a blue card after transplant on preparing and taking all the meds. Sounds like they will be super organized. She explained the R word. Rejection. And not to be worried if it starts or anyone calls with it because they watch it close and keep an eye on it to catch it early.

10:00 Dr. Seal transplant surgeon discussed that we have a DCD Donor (the donor had major neurological brain trauma but the heart is still beating) they are very specific with these and in the past they were avoided because of bile duct complications but these days they are great. And have done hundreds of them.

10:15 Dr. McMann resident and she came in with all the consents. She explained also the donor specifics. Low risk. Hep B Core Antibody. CMV positive. Said his chest X-ray and ekg looked good. Surgery should take 6 hours. Waiting room is the 2 nd floor. There will be lines his neck and groin. Also arterial lines in wrist and groin. He should come out of of surgery round midnight. He will go straight to ICU intubated. With JP (?) drains. They are looking for blood. Also if hemoglobin drops it could mean internal bleeding. He will have a foley. And the incision will be a chevron cut. At about 5:00 am they will start weaning him off all things. He will be in ICU a day or two. Then he will be transferred to the 8th floor step down unit. He will also have an ultrasound of the liver after surgery.

10:30 Dr. DeGregoria transplant fellow surgeon. She said Dr. Seal and Dr. Sonnier who we met in evaluation and she will be in OR. Dr. Sonnier will start the case at noon. Which means they will look at it as soon as noon. She explained in detail about the Hep B. This donor has been exposed to that virus. The donor is cleared of all infection. No signs of active virus. It means extra meds for a while after surgery to make sure of no transmission.

11:30 nurse went over his lab results. She was impressed and all the people here are saying how quickly he will recover. Everyone is so happy for him. He has a personal best again on that BILI front at a 7.8.

*****OR time is now moved up to 3:30****

Pastor Jackson from the church here came and prayed over Kevin. Pastor Pope called in on speaker and prayed over Kevin. And our nurse after getting Kevin’s history sent a Chaplain to pray over Kevin. I came to the hospital with this song in my heart: This Is My Story This Is My Song Praising My Savior All The Day Long! And no matter what happens we will praise Him. We have perfect peace. We just continue to trust Him with Kevin’s perfect healing. Kevin’s remind band bracelet has Isaiah 40:31 “But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.” Isaiah‬ ‭40:31‬ and he is absolutely living it. Kevin is calm. Excited. Happy. I took a picture on the way here of the red light we were at with the Huey P Long bridge ahead and the time 7:22 am with the map of NOLA on the dash. Through the windshield there is a sunny yet rainy day seen. I told my family group chat that it describes this moment perfectly. Happy for this day. Hopeful for all it holds. Yet sad for the donor and their family. I asked Kevin in the morning while getting ready to come in my nervous chatter talking out loud did he think I should wear make up. Then I realized I needed to pray over him. He was sitting on a bean bag we brought from home just chilling. I knelt beside him and we prayed. I looked up after and wiping tears of joy said well I guess I got my answer! It’s a no make up kind of day. Words will never express how thankful we are for this gift of life. I’m really good. Then I’m crying. Then I’m really good.

Tuesday August 1, 2017

1:00 pm

Labs are rescheduled for 2 today. And I had questions for Jaimie so she called me and filled in some blanks about the back up process we just went through. When we got to the floor last night it was so late that really the place was empty. We roamed around looking for the nurses station and I told her the place was vacant. We took a wrong turn so once we found the station there were two people. The lady gave us a security band after we said we were here as back ups. (She didn’t seem like a nurse or anything. She looked really tired too!) The man asked if we found the waiting room and said they would call us back or something. We knew the on call coordinator said it would be 3-4 hour wait. She said that time of night that floor is quiet anyway so it did probably feel weird. She said they really don’t want to admit him so the coordinators all knew he was arriving and it was all behind the scenes and we did the right thing. But once we waited and waited and waited and had no contact with anyone I finally went back to that station and he gave us a timeline kind of. He said the primary was called back at midnight. So the actual surgery started approximately an hour and a half later. And he said once they take the liver off of the ice they usually dismiss the back up soon after. But the on call coordinator calls us to tell us we are dismissed. She explained all that to me because it can be a while and is different for each one. The surgeons take a jet to the organ and that timeline varies for the primary and the back up. Times are set by the procurement team. Once we got the dismiss call Kevin had already scoped out this vending machine that was refrigerated and he bought himself a lunchable! He consumed it in the elevator ride to the first floor! And I had a cheese pizza for him at home and we were excited to taste it and realize how much like Johnny’s pizza it taste like!!! (A place known only to north Louisiana people!) It’s called Theo’s Neighborhood Pizza. Well Theo we think you must know Johnny!

We need the following packed for next time:

•Two blankets!

•Warm clothes for Kevin!

•All the earphones in the house

(Something horrible was on the tv. I finally got up with my short self since no one was in there and turned it off!)

•chargers

•books

•small pillow

•flashlight or book light

We did pretty good for newbies but it was just really super weird. But the entire waiting room was ours alone so we may as well make it home! It was the coldest place on earth!

It’s 4:00 am and we are still here but got the call that we are free to go. He can resume regular activity. I had her cancel the 9 am labs since we are so tired.

At Ochsner. West Tower. 8th floor. Transplant step down unit. Waiting. We are back up. It’s our first time. We’ve been here since 11. Poor Kevin. He hasn’t eaten since we got the call. And he  has routine lab appointment at 9 in the morning back here. I think Kevin is a brave and courageous champion! Taking it all in. Strongly. Quietly. Patiently. Holding his own. A friend texted me earlier that we will have our Phd in waiting! Indeed. Yes indeed we will! And sent these encouraging verses:

“Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee. Trust ye in the Lord for ever: for in the Lord Jehovah is everlasting strength:…Lord, thou wilt ordain peace for us: for thou also hast wrought all our works in us.” Isaiah‬ ‭26:3-4, 12‬ ‭

Monday July 31, 2017

Jesus Jesus Precious Jesus Oh For Grace to Trust Him More…. this hymn was ringing in my head as the clock ticked down to leaving for the back up. That was 10:30 pm.

3:30 pm

We got the call to be back up! We haven’t even been here a week. When they offered it and asked us if we could be at the hospital at 11 pm I was like. Well, that’s what we are here for. We were seeing the Dunkirk movie so I stepped out when I saw I missed a call and ended up missing the end of the movie because I was getting all the information and settling down. They actually were so super chill. This particular time the donor is brain dead and they have a primary so Kevin is back up. He has to be “on campus” and once we get to the 8th floor in the West tower we may wait a while. Like 3-4 hours! From the moment we accepted the back up offer Kevin was not allowed to eat or drink. I told Keith and he was like go sneak him something! Lol! I told him he’s such a Troutman!

Sunday July 30, 2017

HOTX vs NOLA

Kevin hit the tired wall. He stayed home all day and rested. The family left in the afternoon and it was tough on me. The only thing that makes me laugh is how much they make fun of me for saying NOLA or referring to New Orleans Louisiana. They say it isn’t a thing. Like I made that up! It’s a thing! So Keith keeps trying to say HOTX or HOT-X! For Houston Texas. That’s going no where my friend! No. Where!

Saturday July 29, 2017

Copying a devotion from a book gifted to me “kindle wise” from Heather. I keep hearing from Him spot on every time I open this!

“Standby Time

With or without warning, there will be long days defined by laborious waiting. Waiting for a call, an update, or a result; waiting at home, in the car, clinic, or waiting room; whatever and wherever…waiting. Because of the unseen and unknown, waiting can be marked by adverse reactions, namely worry, anxiety or depression. Satan loves this worry-filled standby time because there is a lot of idle space for him to potentially move in to your spirit. Although difficult to do, one of the greatest efforts you can make is to replace this worry with hope. Hope in Him. For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what he already has? But if we hope for what we do not yet have, we wait for it patiently . Romans 8:24–25 from Canopy: 366 Days for Parents of Critically Ill Children by Anna Turner

July 28, 2017

We heard from Jane in Houston. Actually the caller ID gives me a near heart attack when I see who is calling. And even when I say hello to her I’m waiting to hear is it an offer! I told her and she was like oh my voice would be raised to an octave that only dolphins could hear if that were the case! She was just checking on us and reminding us we can call her anytime for anything!

Caleigh had to go to Hobby Lobby! It’s literally walking distance. She wanted to look at dress patterns. So we had fun doing that. Houston people who know how to sew she may have questions. Anyone in her contact list she may be face timing you once she gets her machine back. The girl who didn’t like patterns is now willing to try them! Can’t wait to see what she turns out!

We introduced Cole to Cafe Au Lait and beignets or what Caleigh calls sugar pillows!

July 27, 2017

This was our first day without appointments. We actually had to finally go grocery shopping. I looked up the stores in the area and we just decided to stick with Walmart Super Center! Maybe we will venture into Winn Dixie or BreauxMart in the future. Keith, Cole, and Caleigh are coming in tonight for the long weekend! We heard from Jaimie and she cleared up some appointment canceling and scheduling they are doing. I can see all this on the app but wait until it settles down before peeking at what is next. They want to see him every two weeks with labs. They also want a re check on labs so next week he has that. Mostly the white blood cell count. He’s typically low and it looks like his baseline the doctor here said but wants to recheck it just to see.

July 26, 2017

We had an appointment with the social worker team. They just started this for relocated transfer patients. They just want to meet and make sure once patients are relocated that they have all the support they need. They just talk. Get to know us. And they gave lots of good information for the local area. Also she’s a great contact for any questions. We got back to the apartment and absolutely crashed. It all caught up to us!

We also visited a church our church in Houston actually supports as a church plant here. It was a very good service. We are looking forward to going this Sunday.

July 25, 2017

•We got as far as Lafayette last night.

•Made it to New Orleans for labs then we saw Nanette the liver NP here. She is very nice. We like her! (She is the equivalent of Erin, Phuong, and Samantha in Houston)

•Heard from Jaimie (NOLA liver coordinator equivalent of Jane in Houston) and he is #13 on the list. Several people like 6-7 ahead of him will be skipped a lot because they are multiple organ. She said answer every call even blocked ones. It could be anytime.

•sat in the apartment for the first 10 minutes at 79° Someone had turned off the main switch! (Whatever that is) So, we’ve met maintenance and handled that problem!

•unloaded the vehicle and started the settling in process

•Feel truly blessed!

***they said when sending packages make sure to send “signature required” or they will leave it at the apartment door. And sometimes that’s not such a good idea. If we are not home they will accept packages at the front if they aren’t too large. Front office said it depends on the carrier. Sometimes they leave a slip with delivery window for another day.

July 24, 2017

We planned on leaving on the 25th in time to get the keys and move in. But Ochsner called and had an opening for Kevin to see the liver NP. Originally scheduled for next week. This is huge because they put him on “hold” until they see him. They just want to lay eyes on him. And the first available was a week away once we got here. So when we got the call that they had a cancellation we just took it. I love what a good friend texted me: “And YES, I totally believe you got this appt and no hold time. El Roi – our great God SEES you and knows exactly what you are going through and what you need. He sees. He truly sees YOU!!” To which I replied AMEN!!! And yes!

We left in a bit of a hurry. We did get to celebrate Tiffany’s birthday dinner. So glad to be surrounded by such a great and loving and caring family before heading here. Tiffany and Grant gave us the cutest clothes basket filled with stuff for move in! Bailey cracked us up. She has gone from guttural growling to high pitched squealing! But she’s so stinking cute! So we don’t care!

We are beyond blessed by beautiful giving people in our life who are stepping with us and encouraging us and lifting us up in so many different ways. We are overwhelmed with their generosity, love and care.

July 21, 2017

Apartment hunting. The first of the week I heard from Ochsner with a list of apartments to check out. It took most of a day to call and find out if there was a first floor availability for next week. Then we realized we just needed to look in person to have peace about the apartment. Keith and I left Wednesday and looked most of Thursday. I had several appointments already set up so part of the ground work was done. We narrowed it to three and by late afternoon put a contract on one! We should have known it was the one based on its proximity to Hobby Lobby for when Caleigh visits but still trekked through the day. There’s nothing like visually seeing, hearing, and smelling what’s around the place. Pastor also gave us a church to visit. So we drove the route to Ochsner and church and definitely love how close it is to the hospital. It is less than 10 minutes to get there and we don’t have to use major roadways. Because of our insurance we got a corporate but without bedding. They cover one number. We definitely could have gotten it for less had we done all the leg work but we would not have been reimbursed. We tried. So in the long run it will be easier on us! I’m for easy! We just need clothes, bedding, and food. Tiffany and Grant gifted Kevin a Blue Apron box that he will be thrilled to get once we move in. He already has appointments for Wednesday July 26 so we will relocate on Tuesday July 25. We need to get there before the apartment office closes so we can get the key and wait for a liver! All week He kept giving me peace about all of this and especially showed me through many protecting and providing verses that we are doing the best and He will provide and protect. Keith keeps telling me to make the most of it and it’s an adventure! I keep asking myself is this really happening? It’s just so weird. Face time and weekends when family can visit will be our new friends! —well, not gonna lie, Cafe Au lait and beignets will also rank pretty high!

July 12, 2017 Wednesday

Listed In NOLA!

We knew today Jaimie (transplant coordinator in NOLA) was presenting Kevin. We heard from her late afternoon that he was being listed! The first call was to inform us and field all our questions. Goodness did we have questions! We then called Jane (HMH transplant coordinator) and ran everything by her. So much we never knew to ask but pretty much both places are the same. Just at Houston Methodist Hospital *HMH they get the sickest of the sick and the MELD scores are higher. Like 30-40 in average transplant. Kevin’s a 20 NOLA 22 HMH. That’s all based on their most recent labs. Jaimie said it would be best to relocate because then we would be given more offers. Kevin was graded A by the surgeons as an excellent back up patient and primary patient. We spoke with Kevin first. Had a huge talk in our room with him because we know he voiced he wants to be transplanted in Houston. But he also wants his life back! We are dual listed. We can still get offers from both regions. I asked. We can be in NOLA Jane said and she could call with an offer and tell us to catch the next southwest flight back to Houston. We were glad to hear that because we didn’t want to like turn our backs on them here. And we didn’t want them writing us off because we were in NOLA! She’s like that’s why we encouraged you to go there! Everything we mentioned that THEY did she would reply with a similar yes we do the exact same thing. We just didn’t know because of how low Kevin’s MELD has been. For example when Jaimie called back once Kevin was officially on the actual LIST she said he is #14! I told Jane who I feel like all year I never knew to ask a number. Especially for his case. She said, oh, he has a number but we didn’t tell you because it’s too depressing! Here he is in the 300’s. They want him there yesterday! So, we are getting our ducks in a row. Realistically I can see us heading there the week of July 24. She was fine with that. I told her we needed to find a place to stay first. The social worker can help with this and in the education classes we heard several ideas.

Kevin can never be without a caretaker. For now it’s me with lots of support and back up for things here. We’ve been asked several questions and we honestly do not mind them because it helps us process it all too! And it makes me feel normal when I hear friends asking what I was concerned about. So that feeling I had before we heard officially that Keith kept telling me to get out of the sock drawer…was right! Even though it will all fall into place there are some details that need to be arranged! So, I’m staying in that drawer Keith! (For the record anytime we would have company come over. Family. Friends. Especially sleepover long term visits I would hear they were coming and start organizing my sock drawer and sweeping under the washer and dryer and refrigerator! He would always be so dumbfounded but it’s just the process I start with then finally end on surface clutter. He starts with surface clutter and we meet in the middle! All the while telling me to get out of that drawer!)

July 11, 2017

Jaimie called needing Kevin’s last scope. I feel like we have sent this twice already but in actuality I have only requested it twice and am not sure how it wasn’t received or included with other records. I called the doctor’s office who did his last EUS and had them fax it directly. I did ask Jaimie if she could see the fax machine:) So the report from Dr. Nguyen made it this time! (That was the one done in September 2016 and it was testing the suspicious nodes that so far have only been blood. Repeat and keep a close eye on but nothing to keep him off transplant list. )

July 7, 2017 Day Two of transplant evaluation in NOLA

Kevin is fasting for today’s appointments. He’s not eating or drinking all day and wasn’t allowed anything past midnight. He has 6:45 am labs  (turn in beloved orange jug), 7:15 am ultrasound, 8:00 am X-ray, 8:45 am ECHO, 9:45 am drink prep for 11:45 am CT scan. Our coordinator will call and tell us where to meet her around 10:30 am. And that’s our day. They could add to it if they need anything. Caleigh is rocking the waiting room with a red Ochsner hoodie and sweet tart headphones watching mermaid shows on her iPad. Keith looks like he’s chaperoning on the bus trips we take: sleeping soundly while sitting straight up! This hospital does not even look like a hospital when you walk in. We all thought it seems more like an airport or a mall. It has a completely different feel about it. It does have a hotel connected called Brent House Hotel and an open concept. Valet parking is five dollars! I am reading all the material from yesterday. So far my favorite quote from the kachunked booklet is from Corrie Ten Boom–Worry does not empty tomorrow of its sorrow. It empties today of its strength.

Jaimie the NOLA transplant coordinator came and found us. Kevin was a little behind in the appointments because the first one took longer so it bumped the day. She gave us a booklet on getting around and settled in here. She wants to present Kevin next Wednesday so if we haven’t heard from her we need to call or message. I thought I had the app but Kevin saw me open it and said I was on the internet. So I must have saved the shortcut to the patient portal in my patient portal bubble of all things patient portal. She is finding out different things for us like do we need to move here as they see him getting nearer or higher on the list. There are a lot of people here from further than 6 hours away. Their transplant center transplants between 30-35 so this is the place to be for people like Kevin.

July 6, 2017

Ochsners New Orleans Day One of transplant evaluation in NOLA

5:00 am awake and get ready

6:00 am breakfast

6:20 am leave for Ochsner the rainbow guided us right to this place!

6:45am Park

7:00 check in for labs see people with orange jugs and wonder what do they have.

7:10am register for labs

7:20am Kevin is called back for labs. They take 17 vials and send him out with two cartons of diet cranberry juice which mom carried around all day because he didn’t really want them. Mom was afraid he may pass out. So she kept them for in case of emergency.

7:40am Check in for bone density test. He was given two pages of his scan and after Keith and I both read it we realized we knew less than before we read it. Have no idea what that was.

7:50 am check into transplant clinic. We “thought” we could have a free afternoon because nothing was listed from 8 to 4 so we knew we would slip away and come back at 4 for last test. Only… we stayed in exam room 5 allllll day. All. Day.

(Since we were clicking through appointments this next one I went back with Kevin and Keith and Caleigh stayed in waiting room. When we realized it was the see all transplant team I called Keith and said get back here. He walked in without Caleigh and I was like. Where is Caleigh??? He said he LEFT HER SLEEPING IN THE WAITING ROOM AND SHOULD HE GO BACK AND GET HER!!?? I’m laughing til I am crying over this! We are in New Orleans! YES. GO. GET. HER!!!! And Who Dat gonna leave my daughter in a hospital waiting room asleep!!!!) There’s another funny story about him not hopping out of bed straight at 5 am so Kevin could hop out at 5:15 but we will save that one. It makes me laugh cry too!)

8:00 am Kevin was given a goodie bag of before mentioned orange jug and instructions on said jug along with a small container. He is to give urine sample now in small one. And carry the other one around for 24 hours using it to collect urine and keep it refrigerated returning it at 8:10 am being sure to urinate one last time before turning it into the lab. So now we know what all those orange jugs are.

He was given a STACK of paper work to complete and periodically the lady would pop back in reaching her hand in for whatever paper he finished. One paper said vaccinations. Yikes! Cole came through here. No service in the room so my plan of all things digital was epic fail. But Cole found one shot record so he sent a pic. Kevin listed all vaccines we had or knew from that.

8:10 am Pharmacy representative stopped in the room. She went over all medications for post transplant and explained about how long each would be taken and how much they are. We have a printed list as reference in the file. (At one gas stop we saw an Office Depot and Cal and I walked in for a binder. Came out with a green flex file and organized it Thursday night quickly with the few things we brought. And glad to have it after all the papers and cards we got!) So much of this I know or am familiar with from my dad. You start out taking a lot of meds then they wean it down to one for life. In most cases. Almost every patient is rejecting the organ in the beginning but they adjust the rejection meds to keep it from going further.

8:20 am Financial lady stopped in. She went over our insurance plan. She is actually covering for Vanessa whose liver finance contact but on vacation. She answered lots of financial questions Keith had. Too bad he didn’t have his spread sheet. Basically we need to walk into Methodist billing department and have them file things properly. Our insurance covers transplant under a different section and this hospital files things in two ways. Personal: like stitches and broken bones. And transplant. All things hospital stay should be filed here and covered 100 %. Even on the way to New Orleans I answered a call from a machine telling me we need to pay some emergency doctor and we were turned over to creditors. They gave some long number and referenced an even longer one. Oh well. I didn’t write anything down. I figured it’s their fault for filing it incorrectly and we would handle that another day. I answered because we answer all calls! Until we get the liver!

8:30 am Nutritionist hopped in. She peppered Kevin with questions on what he eats and what is his diet. Dr. Galati would be proud cause his first answer was “2 gram sodium or something with high fiber!” She gave helpful tips on what is a low sodium item. Anything between 140-150 mg is usually low sodium but joked it was lettuce! She said anything below 200 is good. Usually no deli meat. Use lean cuts of meat like chicken or turkey baked instead and slice that. Also she said there were several Mrs. Dash low sodium marinades that are good. Use herbs and spices to bring flavor to food. Trade off. If you eat a higher sodium meal like chick fil a fast food then go easy the rest of the day. Other low sodium ideas is black label bacon center cut. (240 mg not bad when you need that fix) Tortilla chips that are 70 mg for 13 chips with fresh made grocery store salsa or Keith’s homemade.

She asked him what all he ate. Drank. Liked to do. Exercise.

9:00 – 10:00 am we left the room to go to another room to hear education of all things transplant. So very informative and we were given an entire kachunked binder including power point over info given. It was question answer and the presenter was a nurse and current transplant coordinator for A-N. 16,000 people are listed. 6,000 are transplanted each year. An apartment complex she referred us to was Levee Run Apartments after transplant. Hospital Stay is 5-10 days and we are to stay local for 6-8 weeks. They can get us in this place for all transplant patients very inexpensive. (Insert here huge plan needed for move in to that place day. It’s not anything we worry about now or once we get the call and are on our way to the hospital. But they will get us in but cannot get assigned a unit until discharge. I’m imagining a container of items needed to survive 6-8 weeks from pots and pans to linens and such.) They explained fundraisers and who to use to guide us if we ever chose to do this. Mentioning and reminding that funds can be tucked away for the day kids go off parents insurance. Or just to replenish travel expenses…)

The average wait time here is 3-6 months. They actually mention where people are on the list. Houston never does. I guess it’s a region thing. O is the longest list. And AB is the shortest with currently 5 people on it in the entire region. They may wait longer due to rare blood type. Kevin is O. Just because you are higher on list does not mean you are next. It’s all about MELD score and blood type. Even size and age are considered next. They get offers from all over.

If he is admitted to a hospital locally they want to know and may transfer him. They went into detail about when you get the call. We have 30 minutes to leave for the hospital once we hang up. Since we are 5 and a half hours away they will expect us in 6 hours. We go to admit or ER. Once there they send him to ICU or TSU. Kevin will be prepped for surgery almost before the organ is in the hospital sometimes it’s on its way. They discussed DBD, DCD and PHS donors. We realized once a body is pronounced dead the organs cannot be donated. There is a small window of time upon arrest and organ donation.

DBD- donate after brain dead

DCD- donate after cardiac arrest (heart stops before brain stops)

PHS- Public Health Service high risk

And some families of donors give a certain amount of time for things to take place and if it doesn’t happen then they respect the wishes of the family and sometimes those organs cannot be donated. So much to think about. We learned a lot more about organ procurement than we remembered.

Timeline of surgery was given: 4-6 hours after which he will have breathing tube and IV’s and drains and in ICU for at least one day. He will awake and know somewhat where he is at that time and that’s a good thing. They see signs of liver recovery as he wakes up. At least 5 days in the hospital and once discharged 6-8 weeks stay locally to make it to all the follow up appointments and labs. The first day after discharge is always a follow up. Tuesday’s is surgical follow up in clinic days. Once the surgeons have confidence in his transplant success they transfer him back to hematology doctors who follow him before sending him all the way back home. They said we could ask to be followed down the road closer to home but if we are transplanted at Ochsner then we are always their patient and can ask or call anytime even if they are not following him.

They mentioned a website we can check I think srtr.org to see the survival rate of all transplant centers.

They are gathering information and tests and will present Kevin within two weeks. We can call if we haven’t heard from the transplant coordinator by then. Jamie is our transplant coordinator here and we meet her tomorrow.

10:15 Dr. Tyson Hepatology she packed a punch. Questioned us and was very thorough. We couldn’t tell her if Kevin was cirrhotic. I’m sure we know. But at the time we were blank. We couldn’t even remember when he had a biopsy! But gave it our best guess. We sent all this stuff so I did not refresh and although tempted to bring “all medical records” as each reminder stated I chose not to. I did pull out the most recent ERCP for her to make a copy of. We explained all his hospital stays. Cholangitis. Pancreatitis. When we mentioned adrenal insufficiency she was not convinced. And my lack of info to reply wasn’t that great. Mom to Dr. Dr wins every time. Like all I know is they said his use of budesonide caused it so switched the steroid. But she said he’s on that for AIH. yes. It does both. I need to come back to this. I feel like they couldn’t ever truly test him because to be off steroid would make him sicker but he needs to be off it to check cortisol level. To see if he’s adrenal insufficient. She also said he could probably stop taking all medications. Why not? Was her reply. Because he’s already in need of a transplant. So. She seems concerned about the risk of what he’s taking doing damage while waiting for transplant. I don’t even know what to think of that. My first thought isn’t a good one. She must not be a mom. Let’s completely torture him already! He’s living in such a crazy life now. Definitely gonna go to houston with this thought. Already ran it by tiffany and we both think it’s like medical malpractice. Thinking like that why not pour alcohol down him too. That ought to put him in liver failure! She was nice and informative I’m just not familiar with her bedside manner and treatment plan. We’ve heard this place is aggressive! Now we know! In all that we did explain that his meds have gone from high amounts to low amounts based on his labs and settling down his system. She wants labs in the morning for vitamin levels. Today his MELD is a 20. Leaving Methodist he was a 22. She did say she would like to see two weeks on one antibiotic and switch to another one. Then switch.

11:00am Amy the Social Worker she questioned us without looking like she was questioning us then after folded the paper and paper clipped it. Friendly and funny. She squeezed information out of us by story telling kind of. Some direct questions. She asked here for the list of caretakers. She was satisfied with close family members and let us know that after transplant Kevin has to have a caretaker 24/7. And will for a good 6-8 weeks. Lots to put into plan here. Especially if we are NOLA transplanted. They may ask us to move closer as they see him creep up the list. They seem to be confident that they can tell when he will even be two weeks out. Another question for Houston. She needs to secure our power of attorney and advance directives we filed in Houston. That’s all she may need if she cannot pull them from Care Everywhere. Monday’s are labs. Tuesday’s are surgeon clinic follow up. Same as Houston asked how are you handling this. Kevin is a quiet soul. He replied his faith and prayer and my tears could not be contained. I didn’t keep up with who was in the room when the tears flowed but different people sparked them and all I could do was all I could do! And that’s let them flow until they don’t. Wipe and redirect. Wipe and redirect. Sometimes it just all catches up to you. They have been around this for years. They work in it everyday. It’s commonplace for them. It should be commonplace for us but some things just take it out of you. I know we have a friend in her and are able to reach out to her or her team at anytime with any question. She also kind of started a conversation I knew was out there but didn’t want to completely address that elephant in the room. She just point blank asked so what are your long term goals once you are 26 and are off your parents insurance. When he turned 20 in my mind I was like wow. 6 years. But that’s my timetable. And this lady’s now but not our wonderful faithful mighty God provider and King’s! When that panic grips I have to give it to Him. But she in my terms piled it on. Kevin did fine. He wants to go back to college. Get a degree. Get a job! It was time for lunch after this and we needed that break.

12:00-1:00 pm we meandered and found the cafeteria because we had to be back in “the room” by 1. Kevin sat down and said “I like it here and all but I really hope I’m transplanted in Houston.” Just a lot to take in. He says so little that I don’t want to over analyze that but boy could I!

1:00-3:30 pm was an eternity. I have pictures of everyone sleeping in this exam room but me. I was so tired I could have but just knew the ID or surgeon would hop in!

***finish this later Kevin wants to play a game!

Infectious Disease PA Jodi Hermes was in next and she quizzed us on vaccinations. She asked for a letter from his ID doctors in Houston clearing him for transplant. We are not completely sure why or who asks for it so I called once back to hotel and spoke with Rhonda the nurse at Dr. Feinstein’s. She said she would figure it out. Also Jodi wanted to know which pneumonia shot he received. Rhonda was able to find it. He had the Prevnar B on May 21, 2016. So he needs to get the Pheumovax 23. They want both. He also has no antibodies for Hep B (even though he was vaccinated) so he needs to start that series again. We opted to do that in Houston since it’s now, one month, and 6 months. She wrote a script for that.

Dr. Dennis Sonnier the transplant surgeon came in. He was young and very nice and knowledgeable. He gave us a little more detail of the actual surgery. Called it a chevron cut. Showed us where on Kevin he would be cutting and explained all that procedure. Asked if we’ve you tubed it yet. That’s a no. But Keith will now! He drew out a sketch of the liver and showed how it will connect. I asked if the bile ducts are toast because of PSC what will they do. He said they make that call once in and if so there is a procedure called the Rout and it connects to the intestine. I really am not 100% here. But there is a plan and a drawing in the file:) It made perfect sense when he was drawing it. He showed us a meld calculate website to use for MELD score. I have an app as well. He asked Kevin what all did he know about organ donors and explained those three initial donors again. (DBD, DCD, PHS) He asked him how does he feel about all this. Kevin’s basically said what he always says: I just want to feel better. And he does. I feel like first, he is a no worries kind of kid, second, we have a transplant survivor in our family, and third, he’s been educated this last year by world renowned doctors and nurses and medical staff in Houston. We could both get jobs answering phones for doctors offices on the weekend. Probably. At least liver doctors! This surgeon is one of many many. The team rotates. There are two in the transplant surgery. He said they get offers from all over. I asked why and he said because they hardly turn away an organ. They are aggressive and want to get sick people feeling better. Perplexing how confident they are. While in Houston we are not sick enough and here they seem to make me feel like we will be transplanted once listed in less than 3 months. They transplant at 25-28. Houston is 30-40 MELD. The question I asked was hard to get out because something was said somewhere today about once it’s “clamped” it has to be used. I asked more of the what if type scenarios. He explained that there are times when they have to go back in from leaks or blockages but they follow very closely. Sometimes the new liver needs thicker blood and they wait to see it produce bile. I really don’t know what I was getting at but just trying to link it all together. It was the end of the time at this room and we had a lot of wait time between them hopping in so exhaustion set in!

3:30 Kim from transplant sent us on our way making sure we knew what was next today and tomorrow.

3:45 He checked into EKG and was out in no time. No one could decide what we wanted for dinner so we all hit the hotel and took naps! Kevin is fasting after midnight for tomorrow’s appointments. The day starts early again tomorrow.

Hospital Stay 11 June 22 to 29, 2017

June 29, 2017

9:00 Samantha came in and said all the numbers are trending down. BILI is 6.1. She’s fine sending us home, but she’s getting with Dr. Seelbach and seeing if we can go home.

10:00 Seelbach said he’s releasing us! He’s happy with all the trending down numbers. He said the report from the ERCP was interesting and thinks the cholangitis triggered the pancreatitis. My thoughts: only it presented as pancreatitis so masking the cholangitis and revealing it in the ERCP. Yikes! We may need an FBI probe on the unmasking. Why it wasn’t revealed sooner causing me much less tears!😂 I think everyone is learning stuff and Kevin isn’t textbook anything.

This was an entire week in the hospital to the day. We thought he would be in for two or three this time last week. So… we are going home and going dark. (And possibly by the time we get home it will be dark! Hoping for express check out!)

June 28, 2017

Kevin needed pain meds and nausea meds last night. He felt warm and his temp stayed in the 99s. Other than sweating through a few times he slept well and long. The floor had staff meetings so we had a late morning getting things started. Win for a sleeping tired worn out boy.

10:30 Samantha just was in. Kevin’s BILI is 6.6. Up from 5.5 yesterday but it’s probably from all that poking around and stirring things up. She said good news is he will have a higher MELD score. I joked and told him it’s his personal best. Goodness. The marker we’ve had has been 5.8. It started all this. It was the number that flew him home from college. I’ve had to massage his head several times this stay and sometimes I ask him what has been the worst and best hospital memory. So far the worst was still a few stays back. Room full of family and crazy uncontrollable pain and maxed out on meds where they couldn’t give anything. It was the worst for me too. The best was two days ago. When we were offered the back up. Such a great moment. He shows very little emotion but both of these memories we all had tears. Painful tears and happy tears!

Possible go home tomorrow was given today all depending on tomorrow morning’s labs.

She explained the ERCP report. There were strictures above the stent so all of this hospital stay is brought to you by “recurring cholangitis.” And my panic when they wanted to take it out who cares! And that caused the pancreas to be set off.

Andrea came as a follow up for Dr. Nguyen from the ERCP procedure. Reminded us that he opened up the bile ducts that are beaded like a strand of pearls. Went over the report and showed us the sludged stent in the images.

3:45 Dr. Seelbach Not gonna let him go home w BILI this high. 6.6 today from 5.5 yesterday. He wants to push fluids to wash out the BILI. He joked and said it should be at a 4 and made a wager. He tried to slip Kevin’s recently acquired sour patch kids candy in his pocket! So he likes the blue ones. Good to know.

5:40 Dr. Galati and Samantha came by. He discussed his ERCP and they told us Kevin’s MELD score is 22. He told some good stories and chatted and as he walked out confirmed that it was cholangitis that made the pancreas mad. He really wants to transplant him but asked about when we go to New Orleans. He wants to know what’s going on! All Kevs liver enzymes are improving except his BILI.

June 27, 2017

Happy 20 Kevin!

You have been NPO all day. We are waiting for an ERCP. It’s 2 now and it was suppose to be at 1. It’s been special. All the nurses have been hopping in and telling and singing Happy Birthday. Jane brought books and a cake. Emil brought coupons for he cafeteria or Starbucks! The party will progress.

So far he’s still battling pain. He has BILI Dr. Seelbach says of 5.5. He’s trying to run a fever so this procedure to remove the stent and possibly replace it can’t happen soon enough! I posted an album on Facebook for him to look back on all his birthdays. Something to pass the time while waiting and fun times to remember.

Dr. Nguyen stopped by before the procedure and said he would not replace the stent. Too much risk for infection since it’s so sludged up now. He said he heard he had a rough night and all about the back up offer. He said that means we are close!

3:15 Kevin is in ERCP

3:40 Dr. Nguyen said he removed the stent. Did not replace it. Swept out the debris (sludge). He is recovering.

June 26, 2017

9:30am

Over the weekend in the hospital even though those here are the best care takers it is just not the same as during regular business hours Monday through Friday. Not all the resources are there. And maybe it’s because I didn’t exactly know how to tap those resources. So I started to feel left behind and fallen through the cracks. God used so many people this weekend to tell me “wait…,” but I’m just going to say I did wait Saturday and Sunday but with Kevin falling apart and in pain was to me, long enough!?! 🙂 :0 🙂 But what I didn’t know was behind the scenes what was happening until this morning. And all I can say is…Lesson learned!

•Naomi one of the charge nurses stopped in. (She calls Kevin “Kevs”) She told us the story of how hard everyone worked to get Kevin in last Thursday when all the beds were taken!

•And I almost refused Dunn 10. Like who are these people and don’t they know!? We are Main 7 people. It was Dr. Carbajal. Jane. Naomi. And Dunn 10 charge nurse we met once in. Who knew.?!

•My 💜 is full again. We are loved. The weekend at the hospital is you get what you get and you don’t throw a fit❣️(this is hanging in my house and I still throw an inward fit a time or two.)

•And Jane just called. She had so much to follow up on. Explained his current numbers. His amylase is 192 and Lipase is 272. (It’s the amylase that has to be under 400 to get transplant offer. Good clarification.) She said his cholangitis is most definitely causing this. It’s a catch because auto immune is causing that:) we are scheduled to see them from previous follow up Wednesday the 5th before going to New Orleans. She said if he’s feeling fine skip appointment and head to New Orleans. If not keep it. She will call us Tuesday. She also asked what cake flavor he likes. He turns 20 tomorrow and they want to stop by. (Made me cry after hanging up)

•Kevin is asleep now since his pain shot. I told her we caught this early. She said yes we did and was glad. But I said he kind of fell apart over the weekend. Thursday even seelbach said how good he looked and what’re we doing here?! Just like that tiger Carbajal described. Everything’s fine and then BAM. She said seeing the numbers where they’ve been she can’t imagine what he’s had to endure. |Poor Kevie.|

•The nurse brought consent papers to sign for ERCP and I told Jane I guess Galati team knows. She said most definitely.

•I asked where the stent was placed and she said that she didn’t have access to those images but is a good question for them. I don’t know why but when they said Friday that it looks like the stent isn’t doing its job and let’s take it out it made me panic (unsettling). But what do I know?

•And anytime I have questions we are to call her. Someone answers on weekends and fields it. Certain people are on a list to call her if called. Or something like that. And we can call Galati office answering service and one of their nps will call. Good to know. I’m always like well we are in the hospital already! But she said sometimes you do have questions when no one is around. So call.

•Jane also said he’s not having full blown pancreatitis. Which I remember Dr. Galati saying last time and at office visits. It’s labeled that and all but it’s not full blown.

11:00 am they came and said Kevin is NPO for tomorrow’s procedure. At least he got full at breakfast.

Noon: A very exciting thing happened here between 12 and 1. We were wondering why NPO because usually an ERCP he can eat up until midnight. Two different NP’s were here one from Galati and one from Nguyen and as they finished up their exam and visit Jane walked in. Our transplant coordinator. She said a very nice O+ lady is on the operating table getting a great O+ liver but they cannot get her to stop bleeding. So if they can’t get her to stop she will be fine but they will stitch her back up for another day but that liver could be going to Kevin! She said it was a very very very long shot. I had tears. I looked and Kevin’s eyes even looked teary. She said to go about our day and we would know something for sure by 6 if not sooner. Wow! Kevin and I were praying around 12:45 for His will to be done and as we were praying Jane walked in saying Kevin could eat. They were able to get the recipient to stop bleeding. Which is an amazing thing! We are so awed by this gift of life program that we have no words but thanks! Jane said she couldn’t think of a better gift for Kevin’s birthday. After she got it all out she got teary because she wanted it so badly for us. So we gave her huge hugs for all she does for us and how much she cares. We continue to pray for the lady with the new gift and for His perfect will for His healing for Kevin. It will happen in His time!

June 25, 2017

11:30 Kevin slept well, and once asleep the pain was managed. He took pain meds at 8:45am tablet then 10:30 a shot: 5 pain level. We streamed his church from college and watched service this morning. He is napping now and we are waiting for doctors to come through. (So far it’s been their PAs and they basically are just checking on Kevin. I really don’t feel like asking them the questions I have because well. Just because. Unspoken and unwritten is sometimes best!)

3:30 He’s had to keep on the pain med schedule so I’m not really keeping up with is like yesterday. But Dr. Carbajal came in who knows Kevin and I hit him with my questions! He answered them left and right. He does not think Kevin is pancreatic insufficient. He said basically he isn’t following that textbook rule of complaining after and during meals. But not all patients follow that rule. He said its hard to tell if it’s the autoimmune hitting the pancreas but he highly thinks it’s the bile duct recurring problem especially where the bile duct enters the pancreas. So when the bile duct is enraged and inflamed it causes the pancreas to be. So possibly that stent needs to be exchanged. The stent was scheduled for replace and exchange in August. He said it could just be getting gunky. (Sludged up) As for the pancreas he compared it to the tiger at the zoo. Sometimes it’s just so settled and happy then the slightest things sets it off. Bowel rest is absolute best. He said it’s a good sign when he is hungry. Good sign. Kevin is hungry on full liquid. (Cream of wheat and chicken broth full liquid). I asked is this chronic or acute because he keeps having it. He said it’s like acute in top of chronic. He said most liver transplants are connected at the common bile duct. I guess that can wait until when and if that happens. I’m sure if it’s not a good connection then the small intestine place will be back up like Dr. Nguyen said happens with most bile duct diseased patients. His levels are coming down a little so he was encouraged by that. Cole and Kevin have the switch fired up again and he was really encouraged to see the controllers out. He said that’s always a good sign. Also I asked about if it is the autoimmune hitting the pancreas and he gets a transplant what will cause that not to keep happening. He said the new liver will relegate that and it usually will not happen. He did say it’s common for newly transplanted patients to get pancreatitis. And the treatment is the same.

June 24, 2017

Pain meds close to midnight last night. Then again at 3:00, 4:30 then again at 7:30 and again 9:45. He is looking very yellow. I am not liking the trend today of this pain. Somehow we haven’t seen anyone from Team Galati and we have questions. Hopefully someone will still stop by. Or for sure tomorrow.

3:30 Carbajal just came in and said keep the diet the same for now increase the amount of IV fluids per hour and just see how the numbers go. (Kevin texted because I got my car out of valet, dropped Cole at RMH, and parked in a cheaper garage)

9:00 NP for the hospitalists came in. Laura is her name. She was checking in for them. Helping them out. She said the numbers were still >600. I asked why we can’t get an actual number and she said once it’s above normal range some labs just record it that way. I told her I was only curious because we came in 850 so wanted to see if In the last three days any of the >600 were trending below. She was super approachable and encouraging and kind!

6:30 am

From Tiffany on why does Kevin get pancreatitis (with pictures!)

From Tiffany on why does Kevin get pancreatitis (with pictures!)

Why does Kevin get pancreatitis?

The pancreas releases several enzymes (amylase, lipase) and hormones (insulin and glucagon) to aid in digesting food. Any kind of blockage in the bile ducts obstructs the flow of digestive juices from the pancreas. There’s nowhere for these digestive juices to go so they get trapped in the pancreas and start to kinda digest itself- causes inflammation. Anytime you eat, the pancreas (along with the gallbladder) gets stimulated to release enzymes (from the pancreas) and bile (from the gallbladder) to help in the digestion of the food. That’s why Kev gets hospitalized, no food, and IV fluids only to stop stimulating the pancreas to produce these enzymes that are just getting trapped. No food = No enzymes. Unlike the liver, the pancreas cannot regenerate itself. That’s why it’s so important to get this thing treated and nipped in the bud before it starts creating scar tissue in the pancreas. I’m not worried about permanent damage in his pancreas because of his blood sugar levels. He’s never had “diabetic issues”. Because the pancreas releases insulin and glucagon (a form of sugar), if it was permanently damaged then he’d basically have symptoms of diabetes- and need insulin shots to compensate for the pancreas not being able to get that insulin out. And that’s not happening 🙂 so that’s good.

As for why they say no transplant when you’re in full blown pancreatitis … I think it just has to do with the fact that all these organs are connected. Any kind of inflammation in any of the organs near the pancreas (gall bladder, liver, spleen etc) can trigger inflammation in the pancreas. So if it’s already inflamed, they don’t wanna make it MORE inflamed, leading to more severe possibly irreversible damage to the pancreas.

The pancreas releases digestive juices full of enzymes through the pancreatic duct. And you can see it’s connected to the common bile duct. Which is connected to the liver and gallbladder. So with Kev’s PSC, the bile ducts are being blocked causing the pancreatic enzyme juices to back up into the pancreas.

That “sphincter of oddi” is a little muscle (like a butt hole 🙂) that pushes bile and pancreatic juices into the small intestine for digestion of food.

I don’t know if that answered any of your questions …. I hope it didn’t cause more questions. Just read your blog and wanted to send you some pictures I found that made sense to me with all the connections!

June 23, 2017

9:00

I asked the nurse to call the doctor and see if Kevin could be given the next step of diet because he is hungry. He got full liquid but the food service was closed so we journeyed to the hospital cafeteria and got vegetable soup, yogurt, and apple juice.

7:00

Pastor visited and encouraged us greatly with these verses:

“I had fainted, unless I had believed to see the goodness of the Lord in the land of the living. Wait on the Lord: be of good courage, and he shall strengthen thine heart: wait, I say, on the Lord.”

‭‭Psalms‬ ‭27:13-14‬

6:00 We are now in Main 7 room 786. It’s on the side of the hall that doesn’t have a shower. Kevin doesn’t care in the least but it does bother me. Maybe they will send us home sooner! There is a community shower across the hall. Makes me feel like a freshman in college again! I told one friend Dunn 10 was like the Marriott and we left that for the motel 6! We got here and the thermostat was on 90

5:45 Dr. Nguyen found us in Dunn 10. He said it looks like the stent isn’t keeping him from having pancreatitis. He thinks it’s his autoimmune disease hitting it. He said if we are still in here Tuesday he can remove it. Unless we want to keep it until after New Orleans. If you know me then you know all I was doing was focusing on not crying because I don’t understand any of this pancreatic stuff they’ve been slowly dropping on us. I mentioned I have questions and great concerns to myself earlier. And. Then the transport came to move us to main 7. Normal place we are use to. It’s good enough timing because I had to focus and pack quickly and load the transport. Once Kevin and I were alone in the new room, then I tried to talk about it with him. And definitely it is upsetting to me. Kevin just takes it all in. What is wrong with me?!? Just seepy. I need some questions answered and some good research in a quiet environment along with pictures of these organs in front of me! Topped with I don’t like what they are saying so I kind of don’t want to hear it. And it’s confusing. Can we just pick a lane and stay in it:) For the record Keith called and I told him all of the above and he was just mad! Said that I just need to wait and hear what Galati thinks. Lots of times these doctors talk off the top of their heads and are just kind of thinking out loud and Galati comes around and wipes that away or explains it a little better. So yes. I will wait.

10 am

Samantha NP followed by Dr. Seelbach

BILI 4.4, Lipase >600, LFT’s 5% lower

Added potassium. Seelbach asked how many times has he had pancreatitis. Said soon it could lead to insufficient pancreas (?) but we have a while perhaps. Never heard of that. He’s leaving him in NPO. Will let Galati decide when he can change diet. Waiting on labs from this morning. Last nights Lipase was still >600. He came in >800

Maybe I will research insufficient pancreas. Last night he mentioned it could be his autoimmune hitting the pancreas. I have questions about that too. And great concerns.

June 22, 2017

Late this afternoon we heard back from yesterday’s labs. And Dr. Galati direct admitted Kevin. I was happy that he made it through the night without waking in pain and having nausea like the night before but it was short lived. He was pretty flat lined. Tired. Not feeling well.

We are in a different wing of the hospital because the Main 7 floor we are usually on was full. They will move us tomorrow if/when a bed is a available. We are actually on the transplant floor in Dunn tower 1056. Pretty nice.

The doctor so far has ordered the routine set up for pancreatitis. NPO. IV fluids and IV antibiotics. Labs. Cultures. X-rays.

9:30 PM Dr. Seelbach came in. He’s just so funny. He said Kevin just looks so good! He hasn’t seen any numbers yet so he will treat him as pancreatitis for now. He hopped back in after texting the np to get the Lipase and it was 850 and total BILI 4.6. So he’s keeping him NPO and ordering an ultrasound stat. I think Kevin just doesn’t fit the mold they want to put him in!

June 21, 2017

*Fried sent this verse Tuesday evening who even knew how much we would need  it in days ahead. (Added Saturday in hospital reflecting back on the week)

Psalm 123:1-2 KJV

[1] Unto thee lift I up mine eyes, O thou that dwellest in the heavens. [2] Behold, as the eyes of servants look unto the hand of their masters, and as the eyes of a maiden unto the hand of her mistress; so our eyes wait upon the Lord our God, until that he have mercy upon us.

My prayer tonight:

Lifting up my eyes to the Lord our Master. Looking and waiting for His hand to supply the need of a liver for Kevin. Waiting for His hand to move, be it Houston or New Orleans. Waiting for the blessing and the mercy of that answer to prayer for all of you.

Awakened in the night

Kevin tapped me around 2 am hurting. He was thinking its feeling like pancreatitis. He was at about a 5 so I gave him medicine for pain and nausea. He went back to bed and is still sleeping as I log this at 7 am. I’m thinking labs and a call to Jane today if he’s feeling half way better if not we go in for IV fluids. I am remembering Dr. Nguyen who placed the stent said it can be painful when the sludge and stuff passes intermittently through his bile ducts. (Or something like that)

June 19, 2017

Pray For Kevin

*** I was just about to post this remind band post when New Orleans called! Kevin will be evaluated on July 6-7!!! Such a praise!!!! Soooooooooo happy they called early today!!!!!!!!!!

**** looking at the calendar Kevin takes his last antibiotic on the 6th!

When I cannot fall asleep or am awakened in the night it is a perfect time to pray for what is on my heart at that moment. Many times I reflect on the remind band I wear always that our church’s Journey class created for Kevin. I’ve made up different acrostic meanings for each letter but in my mind they sometimes go away forever once I’ve thought of one in the wee hours of the night so I wanted to put the ones I remember somewhere and here is a good a place as any! (I am a random counter by nature like my mother in law is a random leaf drawer! She catches herself drawing leaves on her leg just with her finger so she’s not tatted up! But I count things. Doesn’t mean I remember the number and I recount the same things all the time just some things just look like they need to be counted! So I count!) I can always hop back here and add to each letter as my mental madness remembers and prays through them time and again.

P — Pray! Power to heal and Promise for hope of healing.

R — Remember: He remembers. He knows. He doesn’t have to be reminded. He named the stars. I find myself needing this because I think I’m reminding God what Kevin still needs. Yet. He remembers!

A — Almighty. Always. Amazing. Awesome.

He is an awesome God!! Great in strength and power and might. When we are weak he is strong!

Y — Yahweh. Name of God so holy. Yes. I have a prayer outline from our Pastor through His names and grab it many times and cry out to Him and praise Him!

F — Fear Not! Fight! There is absolutely no way to face any day without Him!

O –Overcomer

R — Restore.

K — KEEP. Keep asking. Keep seeking. Keep knocking. Keep circling praises and promises! Know.

E — Encourage.

V — Very courageous Very Calm. Very Kind.

I — Isaiah 40:31 remind verse!

N — Need need need a liver!

Non-shall! (A Caleigh quote!)

Here are some verses that pop in my mind as I lift him up for healing this way.

P: Pray for healing: “He healeth the broken in heart, and bindeth up their wounds.”

‭‭Psalms‬ ‭147:3‬

Another one for P: “Come, and let us return unto the Lord: for he hath torn, and he will heal us; he hath smitten, and he will bind us up.” ‭‭Hosea‬ ‭6:1

R: he remembers “He telleth the number of the stars; he calleth them all by their names.” Psalms‬ ‭147:4

A: almighty: “But his bow abode in strength, and the arms of his hands were made strong by the hands of the mighty God of Jacob; (from thence is the shepherd, the stone of Israel:) Even by the God of thy father, who shall help thee; and by the Almighty, who shall bless thee with blessings of heaven above, blessings of the deep that lieth under, blessings of the breasts, and of the womb:” Genesis‬ ‭49:24-25

A: Almighty: “He that dwelleth in the secret place of the most High shall abide under the shadow of the Almighty.” ‭‭Psalms‬ ‭91:1‬

A: Almighty: “Saying, We give thee thanks, O Lord God Almighty, which art, and wast, and art to come; because thou hast taken to thee thy great power, and hast reigned.”

‭‭Revelation‬ ‭11:17

Y: Most holy name of LORD God: Yahweh: “And God said moreover unto Moses, Thus shalt thou say unto the children of Israel, The LORD God of your fathers, the God of Abraham, the God of Isaac, and the God of Jacob, hath sent me unto you: this is my name for ever, and this is my memorial unto all generations.” Exodus‬ ‭3:15‬

F: Fear Not: “Fear thou not; for I am with thee: be not dismayed; for I am thy God: I will strengthen thee; yea, I will help thee; yea, I will uphold thee with the right hand of my righteousness.” Isaiah‬ ‭41:10‬

F: “For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.” ‭‭2 Timothy‬ ‭1:7‬

F: Fight: “The Lord your God which goeth before you, he shall fight for you, according to all that he did for you in Egypt before your eyes;” Deuteronomy‬ ‭1:30‬ ‭

O: Overcomer: “And Caleb stilled the people before Moses, and said, Let us go up at once, and possess it; for we are well able to overcome it.” Numbers‬ ‭13:30‬

R: Restore: “And David said unto him, Fear not: for I will surely shew thee kindness for Jonathan thy father’s sake, and will restore thee all the land of Saul thy father; and thou shalt eat bread at my table continually.” 2 Samuel‬ ‭9:7‬

R: “For I will restore health unto thee, and I will heal thee of thy wounds, saith the Lord; because they called thee an Outcast, saying, This is Zion, whom no man seeketh after.” Jeremiah‬ ‭30:17

K: Keep circling: “And seven priests shall bear before the ark seven trumpets of rams’ horns: and the seventh day ye shall compass the city seven times, and the priests shall blow with the trumpets.”

‭‭Joshua‬ ‭6:4‬

K: Know : “That I may know him, and the power of his resurrection, and the fellowship of his sufferings, being made conformable unto his death;”‭‭ Phil‬ ‭3:10‬ ‭

E: Encourage: “And David was greatly distressed; for the people spake of stoning him, because the soul of all the people was grieved, every man for his sons and for his daughters: but David encouraged himself in the Lord his God.‭‭” 1 Samuel‬ ‭30:6

V: Very courageous: “Only be thou strong and very courageous, that thou mayest observe to do according to all the law, which Moses my servant commanded thee: turn not from it to the right hand or to the left, that thou mayest prosper whithersoever thou goest.” ‭‭Joshua‬ ‭1:7‬

I: Isaiah 40:31

“But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.” ‭‭Isaiah‬ ‭40:31

N: Need: “But my God shall supply all your need according to his riches in glory by Christ Jesus.” ‭‭Philippians‬ ‭4:19

June 8, 2017

Follow up with Dr. Nguyen. He’s the best! He checked Kevin out at his office and scheduled a stent removal and replacement for August 16. He said his goal for Kevin is to keep him out of the hospital! He thinks the stent is helping keep the recurring infection down. The pain Kevin experiences sometimes could be “sludge or stones” passing intermittently through the stent and ducts. He’s on antibiotics too so that helps. He’s glad he’s made it three weeks. Kevin hasn’t been feeling all that great but he’s not in the hospital either! Keep an eye out for symptoms of infection: fever chills nausea. We spoke with the business manager too. Insurance stuff needs to be handled ASAP for them. So Keith get out your spreadsheet and check this one off. We need to call her back once we get things settled who pays what and what percent.

I told Kevin as we drove back that He sure has surrounded him with some of the absolute best of the best doctors! They are happy to see Kevin as an outpatient. This doctor especially since we’ve only seen him once as an outpatient. Every other time was bedside. He does all Kevin’s ERCP procedures. He was also happy to hear about us getting evaluated at New Orleans. He gave us a story about a kidney transplant patient who was called by Galveston with an offer. Very encouraging visit. Such nice staff!

Tuesday June 6, 2017

New Orleans called! We got two calls in the same few minutes. The Optum nurse on the home phone then New Orleans nurse Shelley on my cell. They have in my words deemed Kevin worthy to be evaluated! Insurance has approved it too. She went over a quick list of things they want to perform and have their own:

-abdominal ultrasound

-CAT Scan

-Bone marrow density

-Echo

-EKG

She needs better copies of these reports:

-EGD (mentioned Feb 2016)

-colonoscopy

-endoscopy

She is moving us along to Teone who will call in a few days to actually schedule him. She went over logistics with me. I mentioned getting a plane ride to New Orleans and she said it doesn’t help with getting more offers. We are still 6 hours away. She said at evaluation they will tell us honestly what they think. Like if moving closer would help. Not that we are considering that yet. We know we will miss out on some offers because of distance.

Once he’s evaluated, which should take about two days, it goes to committee to decided if they will list him. That takes another two weeks for the committee to decide.

•Kim Taylor the nurse with insurance called and spoke to Keith. The half a day he’s home between out of the country and taking off to South Texas! She gave him information about New Orleans travel reimbursement and answered questions about our coverage. Kevin spoke to her as well. Finally got to hear from her and I’m pretty sure we aren’t completely understanding her role especially since Keith asked some questions and she didn’t have the answers to. But it’s an answer to prayer that he was home and could field the call.

•today was one of those days before the calls late afternoon that I spent the early morning adding to my praise page and kind of trying to not focus on New Orleans and wonder if and when I should call them. So basically being a mental case without fessing up to it to myself which should have tipped me off that I’m actually mental! He knew I needed to start my day focused on Him and mostly rest. I did have that same random numbing feeling after hanging up the phone that I have gotten a time or two in the past just knowing that I’m hanging up a call from these health professionals. It makes me cry every time. Or really fight the tears! Hard to explain but just a lot to take in and every once in a while it catches up to me. So thankful beyond words to know that they will evaluate him! Just so thankful! Praising Him for His continued guidance and opening doors. And still completely trusting Him for Kevin’s complete healing. While wiping praiseful tears..

Labs May 22 and May 30

Jane called us with those numbers and placed them in the portal as well. His BILI has creeped up to 4.1 but the “pancreatic numbers” are lower. Not normal but lower. He’s feeling ok. I tell people so so. He texts me about twice a week in the night that he’s at a 5 and is taking a pain pill. He did drop this set of online classes because he missed too much from being in the hospital two weeks and wasn’t feeling well. So we met the deadline to get our money back and we will see the next session where he is. He also has been very tired. I am too! Sometimes I wake up and I know that I am me but other than that I have to get where I am currently very slowly! It’s funny but weird!

May 23, 2017

Follow up at Dr. Galati’s office with Phuong NP. It was a quick visit. Labs from yesterday LabCorp were a tiny bit elevated still. BILI 3.3 I did add since it’s been a while since we’ve seen her (Samantha is now the NP in the hospital) that Kevin’s BILI lives between 3-4. I said we use to freak out when it was in the 2’s! Just a little BILI-humor. His “pancreatic numbers” are lower than when he left the hospital but still considered elevated.

Dr Nguyen’s office called while we were here to schedule Kevin’s follow up visit with him from the stent placement. June 8 at 1:45. Reminder to actually find where this office is. We’ve been once. Mostly we see this doctor bedside. The stent should need to be removed and replaced in August. They usually stay 3 months.

She wants labs again on Monday. Then based on those they will be in touch. Ideally she wants Kevin to stay out of the hospital but smiled and said he doesn’t actually cooperate much here. She was happy to hear we are pursuing New Orleans.

Jane called and went over the lab numbers. His amylase leaving hospital was 235 today it’s 189. Lipase was 366 and today it’s 200. (He’s considered a good candidate for an offer as long as these numbers are below 400)

She is penciling him in on June 21/28 one of those days for a follow up in the transplant clinic.

Hospital Stay 10 — May 9 to 18

(I finally counted them! 10 stays in 14 months)

May 18, 2017 Thursday

It’s GO HOME DAY!

We saw Dr. Dinikar first and he broke the news that some of his numbers are creeping up. BILI. Amylase and Lipase. So he checked with Dr. Nguyen to get his thoughts. Dr. Galati and Samantha came through next and Galati dictated a text to Dinikar “Kevin can GO HOME!” We will see Phuong in Dr. Galati’s office Tuesday and labs on Monday. That. We can do! (Al three doctors are fine with us going home for the record.)

May 17, 2017 Wednesday

Procedure Day: we now know the ERCP is scheduled for 11:30. Dr. Nguyen will place a stent and if all goes well we should be home tomorrow or Friday.

We were awakened with the best and most encouraging visit from our Pastor. He read all of Psalm 34 to us and just truly encouraged us. We are so blessed to be so prayed over and cared for by our Pastor and so many others.

The procedure went fast! Everything was early. The same doctor performed this that has ever done anything ERCP wise–Dr. Nguyen said the following:

•main duct looked good

•he placed the stent as a trial

•it’s in a good position in case he does pass sludge or stones to hopefully minimize pancreatitis

•he did minimal activity in there he said smiling as Dr. Galati requested

•he swept debris out before placing stent

I asked what was causing the pancreatitis in his opinion. He replied two things:

1-sludge/stones can intermittently be dropping down causing pain or

2-an autoimmune problem causing pancreatitis and squeezing the bile ducts causing pain.

2:30 Dr. Dinikar and Dr. Lin

Dr. Dinikar (hospitalist usually one of three Kev sees while on the 7th floor) during his visit Dr. Lin–ID popped in. And we were just talking about what to send him home on antibiotic or not. So they could discuss what to do. Also they are both excited we are looking at New Orleans. Dr. Dinikar also had a chat about how is Kevin eating. He said he hates to say it but based on numbers now he is actually malnourished. He encouraged him to eat proteins and put protein powder on ice cream. Get fro yo everyday! Concentrate on proteins and fats and bulking up to be ready for the transplant surgery. Honestly we told him Kevin eats well when he feels well. He also said don’t try to run but do weights and bulk up. And…..if all looks fine then we go home tomorrow!

May 16, 2017 Tuesday

Today was basically keep calm until the procedure tomorrow that was suppose to be today but couldn’t get scheduled. So up until today the basic of this entire stay has been get him in. Cool him down. Get lots of opinions and think through situations. Get consensus from the entire team. Decide on an option. Wait for it to happen. So not many people hopping in today. We did however feel like we were in an episode of hospital room fixer upper! The Purell hand sanitizer dispenser for this room has been broken since we “moved in.” So if you happened to get in its realm it spit cleaner out on you or the floor. We would clean it, leave it, drop a wash cloth to soak the stuff. No complaints here. We had other things to bother with. But today. Someone else noticed it. Her name is called: The Charge Nurse. So in no time a worker was in removing it and moving it to a better location because this “said dispenser” has broken already twice they say. Once it was moved, there was a place in the wall that needed “patching.” And then a place beside that patch needed some “touch up.” So we took Kevin walking across the street and got us some food. By the time we got back one entire wall was being repainted! The paints didn’t match so…You know. Had to do the entire thing! So we took our food to the 7th floor waiting room. Adventure at its absolute best for a hospital stay! How much more like home can it feel when they start redecorating rooms we are in! Some of the staff wanted to be sure we could handle the smell. And didn’t want to be moved. Ummm how sad is it that a hospital smells like a hospital even with an entire fresh coat of paint on one wall. We did leave the door open for a bit… but other than that. We were pleased with the fix:)

Kevin signed his risk papers and he is ready for the stent to be placed tomorrow morning. Nothing to eat or drink after midnight. We don’t have a time. Just AM.

May 15, 2017 Monday

9:20 am Jane called

She had answers for the question when he has pancreatitis can he accept an offer? The two schools of thought have confused and perplexed us. She spoke with Dr. Ghobrial (transplant surgeon) about this and he said he would transplant a patient if their numbers were below 400. Keith had just wanted a value and even Dr. Galati said on Friday that the statement was too broad that “no surgeon will transplant a patient with pancreatitis.” I told her I realize that term means something different to each one speaking to us but it is good to have some clarity. Overall we still completely trust them to make that decision when the time comes. She saw Kevin listed on the schedule for an ERCP this Wednesday. Sometime today we will confirm if it’s Tuesday or Wednesday. (And Kevin’s says please be the sooner of the two!)

>>>we also asked her if we should have been alarmed that someone from surgery/post transplant stopped by. She said no need to be because they are trying to make it protocol to have someone from that team stop in when a listed patient is in the hospital.

10:00 Samantha NP for Galati stopped in. Wanted to know how his weekend went. She agrees with number for pancreatitis. Will check with Dr. Galati about the ERCP and confirm what day it will be on. So far he’s managing the pain but it’s still present. She said looking back at Kevin’s ERCP history it does look like it’s time for one. This is his longest stretch between them.

11:00 Dr. Nguyen came in. ERCP will be Wednesday. He tried to get him on the schedule tomorrow but couldn’t. He said he is fine staying here. And I asked how long will the stent be in place. He replied for 3 months. So if all goes well it will be removed and replaced every 3 months depending on,of course, how he does with it.

11:30 Dr. Carbajal

He was resting when he came in so he said let him keep resting. He was glad he was getting some rest. I did tell him Kevin is hungry but then for got to ask if he can move to soft food. But later our nurse called him and he approved it. Happy day!

2:20 Dr. Galati with Samantha

He wanted to see how all things moved along from Friday. Comparing from then to now Kevin said he’s feeling much better. All of his numbers are at baseline. We asked about the stent. He’s fine with having it as long as minimal contrast is shot up there. He feels sure Dr. Nguyen can be in and out with the stent without doing more harm. He reminded us and drew a picture on the white board of what is happening in the bile ducts. They are open to all kinds of bacteria and kind of hold on to it since his plumbing or drainage isn’t working. We asked if getting a stent has any drawbacks when being considered if a donor becomes available. He said absolutely not. And that they would probably pull it in all that process. He showed where the stent would be placed and where along the duct would they transplant. It’s about half of the new one with half of the old one.

4:45 Dr. Lin

She checked in on Kevin. She was glad to know he’s getting food. She said she asked last week how long will you keep this boy NPO! He will get Soft diet for dinner. Also she went over what Dr. Nguyen and all think that the stent is needed to help with the “back flow” of bile and the passing of “sludge” type stones and said to ask him if Kevin’s ducts are separate or together at the intestines. I completely understand it when they are saying it but then lose my train of thought when I go to write it up. Anyway. Hoping it will help keep him healthy until transplant.

May 14, 2017 Sunday –Mother’s Day!

8:30 am Dr. Nguyen stopped in. All of Kevin’s numbers are coming down. Even the liver panel numbers look good he said. He is sticking to his plan of a stent on Tuesday.

May 13, 2017 Saturday

Last night Kevin still had the look of a “sick” kid. His pain has been more manageable and he’s tired. Good news today the Lipase and amylase are both lower and in the 100’s. He actually said he was hungry. So maybe they will step up his diet to “full liquid” and he can get things like cream of wheat instead of broth. While grabbing coffee down the hall one of his nurses said if it were up to them to pick who gets the organ he would already have a liver! We want that perfect liver! So will wait…

11:30 Cleaners were here to mop floor and clean so I ran down to get a banana and milk. I walk in and it’s Dr. Nguyen! At least I didn’t miss him. He thinks let him cool down for now and maybe on Tuesday put in a stent. A stent in the bile duct because when he keeps getting pancreatitis the pancreatic duct expands and closes up the bile duct causing increased BILI and side pain. So he thinks the stent would help like reinforce the bile duct. He said he always thinks about a stent then talks himself out of it! I said we trust you!

11:40 Dr. Seelbach walked in to check on Kevin. He said his numbers all look good. And he thinks he can go to full liquids.

Friday

May 12, 2017

Keith sent this: “Samantha just came by… still waiting on pancreas numbers from labs. For some reason they did not run them or put them in, so they are getting those now. She was not sure of next step. She wanted to talk to Galatti and the team first. The ultrasound did not show anything with gallbladder or any other issues. Checking on bowel movement. That could contribute to pain if constipated. We shall wait….”

Dr. Carbajal just came by… labs looked better today, but contrary to how he is feeling, so stay on clear liquids. Wants to try alternating pain pills with iv pain meds because they tend to stay in body and last a little longer. Will talk to his boss and dr. Dang. Still wants to do ERCP as last resort

A little old man came by to see Kevin (Johnny McDowell??). He had a transplant 14 years ago and was just visiting everyone on the floor. Kevin was asleep so I talked with him. 🙂

“He need nutrition!”- Dr. Lin :)She listened to belly and said nothing going on down there. Will talk to Carbajal about adding to iv (all above came to me from Keith testing updates)

3:00 I was back today for this visit: Dr. Galati with Smanatha examined him. He definitely needs to make “poop” happen. He’s constipated. So they are ordering the appropriate things. We had a comical conversation including seeing his Ronald Regan socks to knowing substances that can make a rock “poop!” Just so glad Kevin isn’t in great pain like last night. We asked about the levels and exact numbers for when “they” say he’s too hot to handle with those pancreatic numbers. He said once again that shouldn’t be an issue and stuck to his guns. He said it was too broad of a statement. We just want the rules! Lol! I told them exactly who came by and told us otherwise. We may never know.

*i forgot to add he wants to know if Kevin “goes” tonight. He wants to be texted.

4:30 am Text from Keith: “He got some rest! Prayer and pain meds worked 🙂 He just requested some more pain meds, but the pain is not nearly as bad as last night!”

Late late late Thursday

***if you are seeing this please pray for Kevin to get relief from pain and great discomfort (in side and belly) that came on around 6:30 Thursday evening and continued to increase incrementally until we left. We had the nurse call the attending physician to let him know that Kevin took a turn for the worse. He had checked on him around 4:30pm and Kevin said he asked if he had gotten worse. I was out. Kevin wasn’t hurting then. So that is why I had her call. Like was he expecting it? Seemed like a weird comment for Kevin to tell me the doctor asked. Anyway. I know his numbers are back elevated and he is still only allowed clear fluids. That wasn’t what we wanted to hear. And Keith came up to let me go home and I texted him in the room so Kev wouldn’t hear that no way was I leaving. He replied what could I do:) Well sit and worry and cry all over him I tell you what! That’s what I could do! Before I left the nurse came back in with a report from Dr. Carbajal saying Kev could have one dose of “what Joey McGee calls Christian heroine” [kevin somehow knows this!] a diuretic to relieve swelling that seemed so visible to me, and heartburn type medicine. I was talking with Cole on the way home about Kevin’s swelling. Just wondering if all that fluid retention from IV everything is causing increased pain. The doctor cannot let him off IV fluids yet because of pancreatitis. I am most troubled by the timing of it all. And it started out in such a good way. This entire hospital visit is completely backwards! He came in feeling ok but with elevated numbers and now is having great pain after being in for three days. That’s usually the start transitioning home. I prayed over him with Cole, Keith, and Caleigh. I just couldn’t walk out without hugging and kissing his cheek and laying hands on him and praying for great comfort and healing! By the time I got home with the kids Keith had texted that so far the dose has helped and he is resting.

May 11, 2017

I forgot to mention that yesterday while we were out walking with Kevin we ran into Mary downstairs. She calls Kevin “my son” and hugged him. She was so happy to see him. Then this morning she walked in the room first thing to clean and just had a fit! She was so glad to see him on her first stop of the day and she hugged him and preached! She told us to not worry! God has a plan. He put you here for a reason and he will do it in his time! And how one day he will not even remember that he was sick! She is beautiful and so kind and happy!

After her talk our charge nurse came in and we ended up chatting awhile with her. She actually knew where I went to kindergarten on Guam! My boys thought I just made that up! (Carrie she is in your place in her big family. When I told her I was 6th of 8 she said: LUCKY! She was 2nd but the first girl.) She also wanted to know the story behind this admittance. I joked and said all the same symptoms he ever has are in a bag and it’s like he reaches in and pulls out one! This time elevated Lipase and Amylase numbers. She said she has learned as a nurse on this floor that the liver, when it has troubles, invites other organs to the “party” so they keep a close eye on all those other organ’s numbers. This time the pancreas was invited! Lol!

I’m sure the doctors will start rounding through soon enough.

11:15 Samantha for Galati

Ok. So much for numbers behaving and trending down. They were elevated again so they will not advance his diet. He will stay on clear fluids the rest of today. Per conversation with Dr. Carbajal they are changing up the IV fluids adding something with more kick (my words cause I don’t remember what else is in it) Which could explain the recurrent pain even though he’s had worse so for now it’s manageable. But. Stink. Didn’t want to exactly hear that but it is what it is. (Kellie says that all the time and I can hear her voice there)

1:30 Dr. Lin from ID stopped in. Listened and examined him. Explained old school and new school of thought w pancreatitis elevated numbers. Some say eat– feed them. Others NPO. When eating the pancreas produces enzymes that cause pain when the bile ducts are backed up so that kind of explains the pain. Eating … digestion enzymes produced by pancreas not working w bile cause it’s backed up = pain.

2:30 Traci an NP for the transplant Surgeons who will work post transplant hopped in. I had dozed off during Avengers and tried to be not a woke up! (Family words there) She was amazing. Sweet. Kind. Informative! Packed a punch! She said she wanted to lay eyes on Kevin. She explained so much. Asked a couple of things. And I said to myself and perhaps Tiffany last night that I haven’t even cried this stay. During her talk I had to reign it in a few times. Then she confirmed that from a surgeon’s perspective he is considered too hot now pancreatic wise (my words) to be transplanted if an offer comes around. She wanted to make sure he wasn’t needing ICU. I was like what is that tipping point? And I said this is where we would have to completely trust y’all. Hopefully y’all will make that best decision. She said so many eyes are on him and she cannot wait to get Kevin on the post side. Explained a bit about that. He will have a different coordinator post transplant along with 5 NPs who will live in his pocket for about a year and multi manage him. I cried when I asked about how if not now will it happen. Because this is the 10th stay since February and getting it to line up is just a miracle. I did say as a believer I know that I know that it will happen and He knows but in that moment the tears just surfaced because I felt disappointed that right now it’s a no for an offer today. Not that there even is one. I think I’m fighting my want to. And if I’m totally honest a little bit of disbelief if this is ever gonna happen. I asked her how many 19 year olds w AIH and PSC with pancreatitis get transplanted. 119 liver transplants last year alone so she said that many. They all come with something. But I feel like maybe I wanted it too much. I wanted her to be walking in saying we have a donor. Cause we have never met with this team before. It makes my wheels turn and I wonder why now. She said she will try to hop back by and also may tap Dr. Nguyen to peek on Kevin. All this writing and I still don’t think I’ve explained exactly the conundrum. It’s like waiting for a baby to arrive! Goodness. We have put in the 9 months for sure! This “delivery room” waiting is killing me! I’m am ready for that joy when this is behind us! I think if I could I perhaps wouldn’t have let her leave the room until she said Kevin was a good candidate. But I really wouldn’t want that. In this last few months we have wanted to know if he actually has pancreatitis when they say he has it because Dr. Galati has said he doesn’t and he wouldn’t be passed up. Galati’s words were you’d be in ICU and wouldn’t even cut your hair! I told Traci this. Threw Dr. Galati completely under that bus. I said Jane will reply no. Surgeons won’t touch him. Galati says yes he’s fine and I will make sure they know he’s fine and texts them in the room! But none of these questions are ever answered with all the players in the room so we have completely conflicting answers until today when I just point blank asked this lady. She said Dr. Galati is brilliant but no one wants to mess with a hot pancreas! She said it’s a tiny organ but you don’t mess with it! Hence. Tears. She said as a believer herself that she knows He knows. And it may be He’s saying I know Kevin’s donor and he’s not ready yet. So we connected on His timing and I guess my want to will have to fall in line at some point but possibly not before I have a “crying gag!” (Silently as not to scare Kevin!)

May 10, 2017

Kevin had a good night. He needed pain meds only once.

8:00 am he’s having X-ray of abdomen

8:30 am Dr. Galati & Samantha came in and were kind of shocked Kevin was even in. But at the same time not surprised and fine with it. I think the “team” has many members! Sounded like I was sitting in on a logistics meeting after they heard what brought Kevin in this time. He asked where we are with New Orleans and said they would be back by since Kevin was down at the X-ray.

11:00 Samantha hopped back in to see Kevin. Routine exam and questions.

1:00 Dr. Carbajal examined and said he could add clear liquids.

2:30 the nurse said Dr. Galati ordered an ultrasound so until that procedure hold off eating. (And we ordered broth. He’s gonna hate to miss that…)

2:35 Dr. Feinstein walked and and said he hates to see him here! He’s so funny! He meant it too. He hates to see him here. He saw the soccer game playing Cole and Kevin are watching and he’s not a fan either of Real Madrid. He said things were progressing well. Numbers are lowering. Maybe another two or three days. He said to ask about a helicopter at Ochsner because they do have access to those. He will speak with Dr. Carbajal.

2:50 left for ultrasound

The rest of the day was filled with visitors: Cole then Pastor … Pa then Baby Bailey with Tiffany and Grant! Brightness! He took pain meds just before falling asleep. And watched a lot of cooking shows:)

May 9, 2017 He’s Being Direct Admitted

Jane peeked at the labs:

4/26: amylase 101 Lipase 115

5/8: amylase 714 Lipase 1350

BILI 3.5 he’s been hanging between 3.2-3.6 on BILI. So it’s the “pancreatitis” levels that are concerning her. She called the team and said they want him direct admitted. She also called “our floor” Main 7 and the manager said no rooms yet but once one is available we will be called by admin. I think it’s a grand plan to wait at home for a room verses that hospital waiting area. No matter how many Pokestops I can get! Praising Him that he isn’t in a lot of pain either. If we haven’t heard by 4 today then Jane said call her again.

6:00 pm he’s in… 7th floor 754

6:30 pm Dr. Carbajal checked in and will start IV fluids and has him NPO to try to settle down the amylase and Lipase numbers.

I failed at IV placement detection. My first job in the room. She placed it practically in his elbow. Well. If it gets too irritating we can have them place it elsewhere.

May 8, 2017

Cole took Kevin in for labs today. I was able finally to go visit Magnolia Market (not sure what the official name is) in Waco! We were honoring a friend (who shall rename nameless) for her 50th birthday! I know the Lord rearranged all of our schedules for us to be able to get away for a girls day. (Even though the day started finding out a thief had broken into and rummaged through 2 of the 4 vehicles parked in our driveway. It’s all junk so they basically just made a mess. People said they were probably looking for guns. So many cameras all around in home security systems that he was seen in several neighbors cars! Don’t people know they are being watched 24/7) Anyway…late evening Kevin still wasn’t feeling well. So we will call Jane in the morning and see if she can take a peek at those labs.

May 7, 2017

Caleigh walked into church this morning and said mom, we have snack tonight, and I was like…. no that’s usually the first of the month or the end of the month. This is the middle of the month. So weird to feel like it should be the 16th and it’s only one week in this month… I looked at the greeter and asked what is today’s “Number!” And still was in a daze. But wanted to post a tiny update for keeping up with Kevin’s latest not so good days. Probably the last few days he has either been chilled with a low temp of 99.3 ish and no higher than 100.2 but has not felt great. He says he just does not feel good. Had a pain pill once only so far and has basically rested and completed last week’s online class assignments. I think he’s hit a wall. I’ve done laundry like a mad woman because I know we could be taking a trip to the medical center soon. I would like to think that it’s just a viral bug type thing. And it very well could be. He did make it the entire month of April without a hospital stay! The last few days his eyes had dark circles under them, very yellow when he pulls down the lids, and he doesn’t have much of an appetite. We are pushing fluids but he isn’t a fan of much of anything when he starts feeling bad. He wondered down this evening and seemed a little better. Maybe he needed a complete day of rest. We will see… I really loved April.

May 4, 2017

Tion from Ochsner called and said they received the medical records. How about that “fourth being with us!”

She asked a couple of questions:

•When was he evaluated in TX? July 18

•Is he planning on going back to school? Yes, taking online. We are flexible.

•Any kidney problems cause she saw all the various MRI and CT scans? I said no other than a kidney stone in the fall.

***She is giving this to the nurse and hepatologist, and they will look at them and decide. We will hear from them within two weeks. Horray they called!

May 2, 2017

Jane called and said she sent Kevin’s medical records: 6 cds and full reports to New Orleans Ochsners Clinic. This is the next step to getting evaluated there. I am so thankful she called to let me know as Kevin would say: the deed is done.

April 26, 2017

Dr. Galati and Jane in the transplant center

•”You’re Killing Me Smalls!” Kevin had this Sand Lot movie shirt on, and we spent the first 5 minutes discussing it with Dr. Galati. He’s never heard of it. So he looked it up. Will have to check back and see if he watched it ever!

•Next visit can be 3 months

•Meld Score is the lowest it’s ever been. 14. So I asked if New Orleans can tell us no!? He said no. They look at his entire history and Jane said he is a dream transplant team’s candidate. (Unless the region has a cut off limit and some do.)

•I also asked if things could be getting better on his insides. He said well who ever has the nerve to ever stop the antibiotics we will see! And that for better or for worse the antibiotic he is taking now is doing its job keeping the infection down. One way to relapse with long term antibiotics is building up a resistance. Dr. Lin from ID said she is happy with his first 30 of 90 days and to check back as he nears 90 days. We didn’t need to see them we just called in and spoke to the nurse who called back after speaking with the ID team.

•He asked about what online classes he is taking and how his physical activity has been. Kevin has been doing great. Driving again and all.

•Direct donation: we had heard about this but thought it didn’t apply to Kevin. Well, it actually does. But it’s a difficult topic to speak of. Basically we just spread the word that Kevin needs a liver. And then if anyone who is aware of the need knows someone who passes suddenly or tragically they can have their organs given to a specific person. And in our case they can say they want their friend or loved ones liver to go to Kevin. And believe it or not there are stories about people doing just this. Only thing is how to go about this topic of discussion. Keith says we most likely will not. But we do have the wrist bands and so many people already have texted me with different comments people make and it’s a type of organ donation awareness by asking prayer for Kevin. Dr. Galati and Jane said they have spoken at church gatherings or events about becoming an organ donor. If we ever have an event then he could speak. My kids already think I’m on the dark side when storms roll through or accidents on the freeway cause us to be at a standstill I usually comment that we may be getting a call because maybe some fresh livers may be showing up. They said watch out if I start asking your blood type and what time you go to bed.

•I just have to silently chuckle because he said there’s your wrist band: if anything happens to you I want your liver!

•And I have to mention here that Jane said the financial lady we met with at evaluation has been carrying Keith’s spreadsheet around drooling all over it wishing all the patients had one. It’s pretty intense. Color coded. But sense needs to be made of it all and sense is about to be! We have our people on it and they now have their people knowing to bill all things transplant to Optum. (Under United Health Care which we have for normal stuff through Keith) Optum covers 100% of transplant.

April 24, 2017

We received the letter snail mail from our case manager for insurance Friday. It was a cover letter stating at the bottom there were enclosures. Only. There weren’t. So we basically got a letter from her repeating everything we knew but with no document to sign even though the envelope was labeled “Time Sensitive Material”…. the level of misunderstanding and miscommunication along with frustration is increasing with each contact with them but after running it by Jane our Houston transplant coordinator she did say that case manager is the one who approves the bills. (Which to me makes this all the more ironic because Kevin wouldn’t have insurance without Keith.) Keith spoke to her and she said we should buy a lottery ticket because the chances of this happening is so slim! Then he came in with the mail today (Monday) and the “enclosures” were in! Good grief. So Kevin signed the documents stating we are his parents and anyone from Keith’s company’s insurance can speak to us about his illness. Which he’s had and been insured by said company since 2011. He turned 18 we didn’t hear from them. He needs a transplant and is listed at 19 we all of a sudden have to have their approval to speak to us. It’s a legal thing and we get it but I am not afraid to call it what it is: ridiculous. If you knew someone you didn’t want to see your private info then knock down all the doors and let them know. When you are us and you don’t care leave us alone. More people are gonna jump through hoops that are hiding things than those of us who are not. We just want him better — yesterday. Make them sign the papers. Turn the tables.

April 20, 2017

Celebration of Life

Kevin was asked to participate in this service of thanksgiving and remembering. We didn’t know what we were going to face but it ended up being truly inspiring. It was a little over whelming because neither of us knew very many people there. We recognized a few. It was a big crowd but once the program got underway and I kept telling myself not to cry I don’t know these people I ended up finding my Kleenex. The stories were amazing. The people in this room were so Kind–doctors, surgeons, nurses, caregivers, transplant recipients…they all had a story.

April 13, 2017

This is the last day of the 5th 6 weeks so summer is ALMOST here!!!

We had an email again from UHC RN to docusign the same document and before we even saw it she sent another email voiding it and stating she is sending it US mail. Good grief! Kevin will probably have a liver before our insurance gets approval to speak to us. Insanity. Absolute insanity.

April 12, 2017

The UHC RN with our insurance who needed Kevin to sign a release so we could speak to her sent it via email to docusign. Well, either we are idiots or she is because we would fill out the basic information then it would generate an error. Basic. Information. We all tried it. One hundred times. So very frustrating. I say face time us! We will show you he’s our 19 year old son and we aren’t some insurance thief trying to fraud out this liver patient! What is their reasoning behind such mistrust! I know she has access to our family health file and can see who we are. That was our one job today and we failed. Miserable. But her inbox tomorrow will show it. She gets a response every time we tried.

April 11, 2017 (***finally updated a weeks worth of all things transplant and Kevin.) I was ready to fax the forms yesterday when they were sent to us. I couldn’t fill them out fast enough! However, that part about insurance was blank. We have insurance and our insurance covers transplants and also steps them outside of yearly coverage under separate coverage so all things transplant don’t keep renewing each year. Keith has a spreadsheet. And handles this part. But when he sees how claims are filed sometimes they get sent back because they are not filed correctly. So we really weren’t sure what to put in the blanks for insurance. Keith said he’d call them today. So I gave him until noon. I called him at work and asked what did he have. He had calls out there and was waiting. Here is where another answered prayer happened because my anxiety of getting these forms over there yesterday was intense! But I also know I didn’t want to call United Health Care. I mean I would. It would be an ordeal. So I just said ok and hopefully they will return your call today!!! Another interesting note is Kevin’s current MELD score is a 20. It’s from his recent back to back hospital stays. They can keep that one until April 18th so I am really wanting Oschners to see that score! I say I cannot go through another hospital visit like the ones we just did because they were awful. Just awful. And he wasn’t sick enough and was so sick! As Dr. Galati said this is the life and face of liver disease: your life is tanked!

Keith called on his way home from work like he always does 🙂 but no new news. So we didn’t say or do much more because it was late. However, THEY called after hours! I was out and Keith who never sees calls actually got the call from our insurance. They needed to speak to Kevin to get his permission to speak to Keith because he is 19. But we have filled out and Kevin has signed 50 million forms giving us permission but this lady said our case is RED FLAGGED because he is 19 and they needed permission to actually call Keith back. If she only knew that we answer every single call that comes to any phone in our home or family. Once I hear it’s not a liver I let them know the only reason I answered is in case it was a liver. Then hang up and block and delete the number. Anyway. Huge answered prayer and another door slung wide open! Keith took all kinds of notes. The lady was so helpful! She said it was late her time so she would call back because she has more information. She wants to talk to Kevin. Sometimes she said something like regions call her with offers and she hasn’t been able to give us info because of red flags. I don’t completely understand that but it sure sounds good! She said we owe nothing and should always owe nothing transplant wise. Doctor visits are different. I listed her in my contacts so we would know. Goodness this made my night so now forms are ready to be faxed. As techie as I am I don’t fax. Never have. So Keith will send them at work tomorrow. It’s still a lot to get together. There’s an entire list of things needed but Jane has them at her fingertips. (Or at least I hope!)

The lady said the only hospital who has a problem with filing transplant claims incorrectly is Methodist! Of course! She said do not even worry about Oschners. They know what they are doing. And she spoke highly of their transplant center… she explained the regions to Keith and gave him some websites and told him about centers for excellence. I need to look those up.

Our insurance will cover Kevin and one caregiver up to a certain amount. So gas, hotel, etc is covered. This is a relief and an answered prayer!

We helped move Tiffany and Grant and baby Bailey across town during all this so it was a good distraction. I wanted to update this page but it really has been a lot to process. We will only go with His complete assurance that this is His plan for Kevin. And we are trusting Him and waiting on His healing of Kevin either right here in the medical center of Houston or 5 hours and 36 minutes away in New Orleans. Kevin is having good days. Doing online class work. I walk in and he’s making protein for breakfast and smoothies with protein powder in them and has a wonderful spirit. He’s picked up the guitar he got several years ago to kind of relearn. I love how creative he gets with his time. We mailed some RemindBands to the Big House today where he lived last year in college and Nina at the mail place just took Kevin in and said God will heal you. Bring me one of those bands! And she commented on his spirit. (How she picked up on that in 10 minutes of buying and packing envelopes I don’t know but it was a wonderful feeling for me.) I am so proud of Kevin. In precept today Heather mentioned how Moses wasn’t ready and took things in his own hands but then went to the wilderness for 40 years to tend sheep until he was ready for what God had planned for him. It was a neat picture to me for our situation. (And we are studying Acts and today mostly Stephen!) If we could control it…and my kids worry I might start taking out people with Kevin’s blood type (!) but not really. I would never. But we know God has a plan and know He has a time and when He is ready and knows Kevin is ready it will happen. It will be perfect. It will be beautiful. I just hope it’s not 40 years! Caleigh needed this pep talk earlier. She just had some questions and concerns and I am thankful her timing was when I had an analogy that made sense to her. I gave her Moses. Because today is precept Bible study day. And it was fresh on my heart. She wants him to be able to go back to college. We will get through this. Kevin will get his life back. That’s all she wants. (Little sweetie.)

April 10, 2017 Monday

I never heard from Oschners so I called them back. They called me back within a couple of hours. Teion called and gave me a list of things to do and look for specific forms in an email. Had me set up his patient portal. And had me send a picture of his ID and insurance card. She needed those to start the entire process. She rattled off all kinds of stats!

•we had to call insurance first. If they do not approve of this or are considered out of network we need to know before we go

•we must live within 6 hours driving distance or we will have to move closer *I looked it up later and from our house to their front door it’s 5 hours and 36 minutes! An answered prayer: Pastor spoke on 3 green lights when making a decision years and years ago. Peace in prayer, A word from scripture, and Circumstances or an open door. We keep asking Him to help us and guide us in this next step of being dual listed. All those three lights are brightly beaming!

•they need all records from evaluation at Methodist

•he can never ever what so ever come to an appointment without a caregiver.

•bring a list of other willing caregivers and make sure those on the list know they are on the list of approved care givers. They will call them. They need to be willing to come to New Orleans and support Kevin by taking him to appointments when we cannot. The social worker will ask.

•The entire process from now until being listed in New Orleans could take as long as three months.

•she sent an email for patient portal then an email with three sets of forms. Fill them out and fax them to her and to current facility.

•call insurance. Call insurance. Call insurance.

•got Cole to help print all the forms because my phone decided to not find the printer when it was in the exact same room and has always allowed me to print from it.

•we made it through this first step “calling Oschners” when I first couldn’t even imagine how one starts that process!

April 5, 2017 Wednesday

I made the call. Jane sent the number during the phone call in traffic yesterday so I took a deep breath and dialed Oschners. Where on earth do you start after they say hello. We were connected right away to exactly who we needed to be. (Krystal) She took our information and explained that a transplant nurse would be returning our call soon. I asked when can I actually expect a call back. She said if I hadn’t heard by Friday to call back. I thanked her and told her I appreciated her help because this is a huge step for us. She was really friendly. An answered prayer: direction and care and confidence

April 4, 2017

4:00 pm

Dr. Galati follow up w Erin

•our biggest question is should we get listed elsewhere. Before we could ask Dr. Galati mentioned it to us! Of course there is a tiny side of me that thought goodness is he kicking us to the curb! I was kind of hoping for a “not yet. Let’s give it some more time.” Instead he said: GO! Anyone who has been praying for Kevin recently will know even if you didn’t know what was going on exactly that this was an answered prayer for direction and guidance in his healing. So we start that process and he will have Jane contact us with information. A New Orleans hospital called Oschners is the next closest transplant center he recommends.

•labs next week– his albumin is extremely low (my thought the next morning was that lab was during the hospital stay that he was mostly clear liquid and full liquid… so protein level would be low normally???)

•follow up in 4 weeks in the clinic. And check in with ID after 30 days on antibiotic.

•we wanted clarity on the two different answers we got over the surgeons being hesitant to offer Kevin a liver when he is in the hospital or has recently been in. Dr. Galati said he would make sure the surgeons realize Kevin is fine and he feels that it wasn’t an issue. However Jane his transplant coordinator seems to infer that they are hesitant especially with the recent pancreatitis issues. They both differ here too. Dr. Galati doesn’t think Kevin is or has had full blown pancreatitis. While the transplant clinic is concerned. They are basically the same unit so it is perplexing the differing opinions. Which means all the more how out of our hands this is. We cannot possibly control any of this so it is a good reminder to wait patiently on Him and trust His plan.

•I had an entire folder of medical history that Tiffany dug up after giving Bailey’s doctor all our family medical history on all things liver. Well, I never even mentioned it! It was in my lap and I used it as a desk for my notes and once he mentioned New Orleans I was just not thinking straight again.

•He gave a very personal story about his sister back in the day needing a bone marrow transplant and she was in a different state and her husband could only come in every so often. The transplant center said she needed more support so after his family sat around her table he volunteered. At that time he said he left his residency and went and stayed with her. He said you get creative at times like this. And something in me knew that I needed to refocus. I had already teared up before this at the mention of New Orleans because as I told him we still have a 13 year old. Later when I told the 13 year old she said she would be fine and listed how many people she knew that we knew that would either take her completely in or help get her where she needed to be.

•he texted Jane while still in the room to reach out to the Troutman’s and closed with asking Kevin to do an extra effort on the nutrition.

5:30 pm When you have a 4:00 appointment in the medical center you are still in the medical center traffic at this time. Jane called and asked was it a good time to talk!? I was like well we are in traffic so of course! It was the absolute most informative call ever! Another answered prayer: understanding and clarity for direction. She said she would send us the number to Oschners clinic in New Orleans and asked if we had any questions. So I started in with them:

•How can we be listed and not live an hour away?

>>>She explained the Organ Procurement Team’s job and timeline. Yes, some donors have a more time sensitive dilemma but we would get offered the ones that basically do not. She gave an example of them getting notified of an organ donor available in let’s say Amarillo (can’t remember exact town)…. the procurement team would take a medical transport flight to the hospital where the body is and wait for all other organ surgeons to arrive. Before this Kevin would be called with an offer that would be something like, “we have a possible offer. No eyes on the organ yet but it’s about 9-12 hours out so make your way to the hospital but we have plenty of time.” The body is on life support and once the team arrives and opens it up and gets eyes on the organ they will call again if it’s a viable organ. If so we will either already be at the hospital prepping for surgery while the organ is placed in an igloo cooler and placed on a medical transport flight back to Methodist or Oschners depending on region the organ is sent to. I did ask how long it can be in the cooler. She replied about 9 hours.

•Will we have to live in New Orleans?

>>>At first we would need a week to ten days there for evaluation. We have already been evaluated so they can use most of the evaluation records from this last summer in Houston. But it will require about that much time to go through the similar procedure while not running all the same tests but meeting with most of the same type teams. (Heart, liver, social, financial…)

>>>if he accepts an offer here we will need to live there from surgery to about two months. She isn’t expecting that long because she said she knows Kevin will do well and expects him to just bounce right back and within two weeks they will be sending him home. Another answered prayer: surrounding us with great people and professionals who absolutely have Kevin’s best interest at heart! (We talked for 20 minutes! Then Kevin and I chatted about all she said the rest of the way home just processing it. He seemed excited. If that masks sense. We laughed because Keith will joke when he visits us in the hospital and say we are on vacation. We were like we really will be in New Orleans! Maybe we will hop around and see the zoo and aquarium…)

>>>we will have follow up visits there as well about once a month.

•Who do we say sent us?

>>>we will be self referred. That’s the procedure. She will be helpful and has a working relationship with their coordinator as well. We can be listed in up to two places. We will contact them then they will get us forms to start medical release of information and Jane will handle all of that.

•will we still get offers from Methodist?

>>>yes. We will have a clone of the team we have here. Transplant coordinator. Doctors. Surgeons.

•Are we able to petition for exception points?

>>>No. We were declined earlier in this process. I mentioned how many more times we’ve been in the hospital and she replied for the most part the board does not put a value on that. And this region we are in does not offer exception points as generously as other regions. I did mention that sounds unfair but she said they are working on more unity across the board. I can’t even imagine how anyone ever selects who gets what donor when. I know there is matching and miracles but am happy not to be in their shoes! Jane is amazing. She has the best phone and explaining voice! She always sounds like no question I ask is ridiculous. And happy. She is happy to help us. We thank and thank her and yet I feel we cannot or haven’t thanked her enough! God is so good giving us her for our transplant coordinator!

March 26, 2017

RemindBands 

At our church all day the Journey Sunday School class Kevin is in passed out RemindBands with #PRAYFORKEVIN and Isaiah 40:31 on them. At a couple of hospital stays ago Scott and Pastor happened to be visiting Kevin and they mentioned wanting to do this. They wanted Kevin to think about it and let them know. Kevin picked the color and verse. Scott designed them. And today they were passed out at church. It is an overwhelming thing to feel so much love and support. Kevin didn’t take anytime to choose the verse either. I’m glad they didn’t ask me. I can be a little wordy … but love that the Lord put this verse on Kevin’s heart. “But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.” Isaiah‬ ‭40:31‬ We have to wait on the Lord. When we think of all the things that go into getting an offer it’s impossible for us to control the MELD score and the perfect match and no current infection and are we an hour away … only God can orchestrate all the things that lead to Kevin’s healing.‭ Thank you church family and all those who lift Kevin up with or without the prayer bands. We are strengthened and blessed by your prayers and support. 

Hospital Admittance 9 from Kirby ER by ambulance transport 3-17 to 3-23, 2017

March 23, 2017

Being discharged! Hoping the pain will be more tolerable at home. They slowly cut his IV pain meds in half letting him us pull form. He will have 90 days of oral antibiotic and follow up with Galati and Feinstein. 

March 22, 2017

Last night Kevin needed nausea medicine. And pain meds throughout the night. He called the sleep he got “fractured.” The neutrogean shots are killing his bones… Dr. Carbajal warned us of this. We’ve seen Samantha so far today and the ticket home is all about managing the pain. We also asked about when do we ask about getting listed in other centers. We were going to wait until he was listed a year before asking but Keith mentioned it last night to me on the phone so in our conversation with her today she mentioned another patient in ICU now waiting on a transplant and that patient is going to go to another center once they are well enough to leave here. Houston transplants (as a reminder) at a very high MELD score. Kevin’s is considered low but in need. 

March 21, 2017

7:00 Dr. Galati walked in with Samantha and Kevin texted me but I never saw it. He examined Kevin and discussed labs and ultrasound with him but basically said he needs a liver. And asked if I was around. Then said she has my number so she can call or text with questions. I walked in and probably missed him by 5 minutes! Kevin did text me. And it’s probably a good thing that I missed him or I would have cried all over them too! So I texted him that I was sorry to miss him and thanked him for stopping in so late. And he called me right then! I cannot even tell you how much I needed to speak to him. I know stuff goes on when all the teams walk out the door but it was great confirmation today after kind of feeling what is going on.?!? The Lord hears my heart and wonderings! 

We discussed these topics on the phone:

•gallbladder — he said it’s a no. Never. That gallbladder isn’t coming out. Patients like Kevin all have gallbladders that look like that. 

•he said what is happening with Kevin is classic PSC all the small to medium bile ducts damaged. 

•the ultrasound didn’t show anything bizarre to him 

•the pain Kevin is having he said based on examining him is also attributed to his large liver and spleen. Larger to him now and it goes along with everything he has going on. Unfortunately. So pain and discomfort from that. Growing pain type thing. 

•it’s not flaming pancreatitis 

•he said we need to control the infection, get with Dr. Feinstein team who has a 90 day plan for extended oral antibiotic care when he goes home, talk with the surgeon Dr. Ghobrial to remind him to be looking for a match for Kevin, think about applying for extended criteria. 

•I finally remembered to ask him about the nor-ursodiol study and he said be careful with those when reading them. They could be for 5 years ago Kevin. I did remember you couldn’t be in the study if you had a Bili higher than 3. But mostly I just wanted to know if that drug is available and FDA approved here. And what he thought. I told him it just sounded promising. Dr. Sonny mentioned it to us. Bailey’s liver doctor. He had recently heard about it. Dr. Galati said he would check into it. 

•And lastly we would regroup in the morning!

6:00 I walked Cole out talked to Keith and Tiffany on the phone. Then knew I couldn’t walk back in the room in the state I was in so I texted Kevin that I was just going to walk around. It felt great to walk and pray and wonder and gather my thoughts. 

4:30-5:30 Kevin was gone for the ultrasound. Cole waited with me doing an etch a sketch of Sherlock. Inconceivable. For whatever reason I was nearing a melt down. Aka. Big Cry! And none of this is happening to me. It’s all happening to Kevin! 

4:15 Granix shot given by nurse and she said they would be doing a complete ultrasound. Didn’t know that. 

4:00 Dr. Linn evaluated and talked about picc line. She is fine with him going home on augmentin. Kevin is fine with the PICC line being removed before leaving here. Something she was saying with all they are doing that his lab levels look good but his pain is not responding that I tried to keep the tears in. She pressed on his side and just seeing him wince and her see it…well they seeped out. Like it’s the unspoken. What next except a liver. 

Sheryl brought us a yummy lunch and chocolate granola! 

Samantha and Dr. Seelbach they came in behind each other. Nothing really new. Dr. Seelbach definitely wants his pain more controlled before going home. 

12:00 He officially is now on Low Sodium diet and can be removed from IV fluids! Maybe he can get more sleep now with less frequent trips to the restroom!

11:00 Mary a wonderful friendly cleaning lady just prayed over Kevin. I’m literally wiping tears! She’s got a beautiful Nigerian accent. She packed a punch! I’m telling you I am sitting here. Thought I lost my vault. Found it. It’s quiet in the room. Every once in a while I look at Kevin and just pray and ask what are you doing next Lord. Then Mary walked in. And cleaned. Gave him a talk about God being in control. Out. Of. Nowhere. Then prayed!!! How precious!!!

8:30 hemoglobin 3/19 8.9 … 3/20 7.7 … 3/21 today 8.5 so he’s good. No blood transfusion needed. 

7:15 Mersha the nurse said his hemoglobin dropped to 5 from 7.7. So she’s doing another draw not from picc line to make sure of the number. 

March 20, 2017

We had Michele and Jeff visit bringing Newks deliciousness. Keith, Cole and Caleigh crashed the party too. It was good getting through the day with good visits! 

6:00 AJ gave him the Granix shot (neutropoegen) 

5:00 Andrea from Dr. Nguyen came in and said it didn’t look like pancreatitis anymore. And that he had some “ascites” and reminded us she had documented this on him before. It’s nothing that won’t take care of itself. She said some patients have huge bellies and have to be “tapped” but Kevin doesn’t need that. I told her it’s the first I had heard of it. Kevin said he kind of remembered them saying it before. 

Dr. Feinstein came in with company here. He wants Kevjn to go home on a pill. But definitely long term antibiotics. Will be ready to hear what other teams chime in on. We feel like last time this happened he ended up in the hospital anyway so long term didn’t help. But for Kevin anything if the PICC line is removed. However it has been nice for him during 4 am labs. No stick. He sleeps right through it. 

We had great visitors today! Megan and Heather then Tiffany and Bailey! 

10:15 Dr. Carbajal His white counts are down. For care of PICC line he said flush it twice. We were only flushing it once. Oh well. He wants him to have a neuprogen (?) shot. To help immune system. It may hurt in his bones as it gets things going. (Can’t remember the exact wording) 

9:55 Samantha, Dr. Galati’s NP, stopped in. They are watching his lipase especially. The Bili is still trending down. No procedures yet. 

9:00 am AJ his nurse brought in a full liquid menu! A step up. He was happy to be able to choose cream of wheat vs broth broth or broth. 

March 19, 2017

3:00 Dr. Carbajal came by. He said keep it clear one more day. He said being hungry is a good sign. Bili and lipase are down. 

10:30 Dr. Nguyen stopped in. It’s always good to see him! He said he saw the labs from this morning and the Bili is back down in the 3s from 5.9 so something’s working. But he thinks it’s still that gall bladder. He said it’s producing sludge. Not stones. And perhaps as the sludge is passing it increases the level of pain and adds to pancreatitis. Those numbers have been elevated before. He wants to address suppression again. Long term antibiotics. We know long term steroid use caused adrenal insufficiency in Kevin. Long term antibiotic use (I called it infection suppression) I need to look back over my notes and see why we stopped that. I feel like it has something to do with Dr. Escudier who did his bone marrow biopsy and screens for lymphoma. He said possibly keep it clear another day. All levels are lowering. He will see what ID thinks. We explained we were going to be hearing from them Monday anyway because his labs Friday were not good. Then he had fever. So basically Kevin kind of fell apart too early:) For now no ERCP.

After this Kevin and I finished watching Crown college chapel and Kevin and I started thinking out loud. Kev thinks if it is the gallbladder doing all this then why not get it out. His MELD isn’t where he will get offers anyway he said. But I think that the gallbladder gets what the liver sends it so with gallbladder out the liver will still send same stuff??? Then we decided to leave it to the smart people. 

9:00 Dr. Carbajal’s MA she examined Kevin and is texting the doctor to see if she can move him to a full liquid diet vs clear liquid. 

A verse from our Pastor:Deuteronomy 26:7a, “And when we cried unto the LORD God of our fathers, the LORD heard our voice, and looked on our affliction…”

March 18, 2017 Saturday

*all night Kevin was just so hot. I was freezing! The room was as cold as it could be. He sweat through the sheets. 

He alternated pain meds but went longer between asking. They also tried the TPA to unclog his other half of the PICC line but it didn’t work. He even sat with it “soaking” for two hours. We walked around with Cole. Rebekah brought a yummy dinner. 

12:45 Dr. Carbajal visited. He said the telemetry can go. He said he was registering a fast heart rate and sometimes they put it on for the wrong reasons. He will increase diet tomorrow to full liquid if all goes well. He’s hoping nothing major needs to be done and that Kevin will respond to current IV medications. He checked the scrape on his leg. He loved Kevin’s shirt! Kevin is a hit wearing that goofy thing!

12:00 a fellow from the liver team came through. He examined Kevin. He said we probably know the routine better than he does. But he’s going to be sure to let the other teams know we are here. Especially Dr. Nguyen. (ERCP dr)

“For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind.” 2 Tim 1:7. Praying His Presence goes before and around Kevin and you. He is a mighty God. Lifting Kevin up.” My BSF leader sent that verse and prayer. I needed to be reminded of this. Simple truth but easily forgotten in uncertain times. Just when I think I am done updating people and can’t ask the same thing again and honestly a little overwhelmed with what may come next … He gives me that… precious. I love how He cares for us through others caring and reaching out in the simplest of ways. 

10:20 Dr. Carbajal’s MA came in and checked Kevin. Mostly took notes. Asked questions. Told Kevin someone may steal his cat shirt! Lol! 

10:30 The nurse wrapped Kevin’s soccer/ultimate frisbee scratch on his leg. He got cleated while playing yesterday. Just random. But today she said it looks like it’s bruising. She kept asking what happened and we repeated “cleated” or “kicked accidentally by a cleat” and she said I don’t know what that is! So we just left it at that. Too tired to even make her get it! 

He’s also wearing one of those telemetry machines. Goodness. I asked why and she didn’t know. Maybe because he was transported… but when he sleeps his heart rate lowers and “they” call. I remember we had this on a previous stay and all the doctors thought it was ridiculous for Kevin. I was asking is it his blood pressure or oxygen levels or heart rate? Oh well…it just means he’s being watched that much closer. 

March 17-18 ER Methodist 59 & Kirby

We remembered to listen to Jane. We got down here after 10 pm and didn’t even sit in the waiting room for three seconds before they called Kevin back to a room. They did labs. The doctor spoke to Dr. Carbajal down the road and said they will admit him. He is running fever and has chills. Has side pains. They started IV antibiotics: Zosyn and Vancomiacin as well as fluids. They gave him pain meds and nausea meds. He’s sporting a random St. Catricks Day shirt for St. Patrick’s Day. Shamrocks and cats! So we are hitting another holiday and got the end of Spring Break this year. I went 10 days about without updating and now I have 2 updates in one evening. At least they can use his PICC line. They mentioned once we get down the road they can clean out the line. Now the other side is behaving sluggishly. One side is blocked.  

I tired my best to fix a Soup tonight that was “bowel resting” … Jane said earlier when she called with his labs that one way to bring the numbers down was to relax the bowel. I looked up a chicken and noodle home made recipe. I’m talking cut that fryer into pieces. Yuk! Shopping to serving was forever! And he didn’t feel like even eating it. Well, so much for homemade chicken noodle soup. I could have cut lots of corners but was watching sodium intake and keeping it clear liquid-ish as possible. So much for self inflicted clear liquids.

The ambulance transfer was very easy. The two gentlemen were so nice. I followed them to the Bertner entrance by the water wall. They rolled Kevin right up to main 7. I did peek in the ER for what I could see. It looked like a zoo. Glad we remembered Jane’s tip. This time we are on the opposite side of the hall. 763. It’s 1:50 am..

March 17, 2017 Friday

Jane called and said she was glad we didn’t remove the PICC line this week. (He finished Zosyn infusion Monday morning) It needs to stay. Or at least that is her thinking. She will get back with us after speaking to Galati and Linn. His numbers are not that good. Especially the Amylase at 391 and the Lipase at 466. (364 and 380 on 3/7) Also his Bili is higher at 5.3. I don’t have the ones in front of me to calculate the MELD score. His last one was a 20. I can only imagine it is a little higher. So, we wait to hear what they want to do. If we need to she said get in. I asked with these numbers would we be allowed to accept an offer. She said it would be on a minute by minute basis. They would retake the labs. But if they are what they are most surgeons say it’s too risky. So the treatment for pancreatitis is IV antibiotics, bowel rest, and possible IV fluids if he has to be hospitalized. I did keep the menus from his clear liquid and full liquid diets. But really it’s broth broth and broth. Juices. Fruit ice things. Hot tea.

For the record since he’s been home he has had pain. In a three day period maybe one of those days his pain is managed without taking anything. The infusion every 6 hours if I haven’t already stated it…killed us. We are so tired. Reminds me of new born baby days. Kevin slept for two days. Is still tired. I tell people we wake up tired. 

So I was glad to hear what the labs from yesterday’s home health visit were so quickly even though I don’t know what to do with them. We are blessed with Jane as our transplant coordinator. Before her, I use to be the Kevin waving flag! I told a friend today it is nice knowing she is going to hunt down the teams and find out what they want us to do. I use to go back and forth calling and messaging and waiting making sure all the right people knew. It was nice to hear her say she would get back with us. Waiting and watching him. 

I also asked her to have the financial people call Keith. He’s been spending hours trying to tackle the insurance part of all this. We have transplant coverage but it’s a circle they way things get billed and covered. I thought about going in the study and seeing if I could help Keith with the stack of medical letters and spreadsheet but decided against it. I don’t do numbers! But sometimes I think I should at least learn them. But then I borrowed a Kevin phrase: it’s not pressing…

It’s a little overwhelming thinking about what could be next. I know we can’t do or control any of it. So I have to just give it right back to Him. (Several times in a day!)

Also he is trying this evening to run a fever. 100.4 So watching that and perhaps will need to get him looked at in an ER. 

March 7, 2017

Erin at Dr. Galati with a Shanghai by Jane! 

Jane knew the picc dilemmas and called earlier and said she would meet us at the 1:00 appointment and bring her bag of tricks for the picc line. One side is clogged and the other side is trying to be clogged. (My words) She said sometimes you gotta show them whose boss! She gave us our labs from the home health nurse yesterday! (Explanation point because how weird it was to watch labs being drawn in my dining room and get them back in less than 24 hours! I still don’t have a portal for LabCorp…) His pancreatitis numbers are creeping up. They are elevated. Too bad that ER dr didn’t check them. He would have discovered the source of Kevin’s pain. (Just wait til I get that survey! I say that every time then forget by the time I get the survey!) Bili 4.3. And she mentioned that with a donor if his numbers for pancreatitis (amylase and lipase) are not settled he could not be considered because of the “morbidity rate with pancreatitis at transplant is just too high.” {hold it in hold it in hold it in!!! My pep talk to myself to not cry out loud after she said that!} We had Erin who tagged team with Dr. Galati. Kevin was hurting. They could tell because when they poked around on him as usual he was guarded and he’s not usually this way. I asked Dr. Galati what he thought that meant what Jane said earlier that if a liver is available and his numbers are elevated he said with pancreatitis you are in ICU and you don’t do anything! Not even cut your hair! So Kevin’s numbers are elevated but he’s not having full blown pancreatitis. Erin recommended as well as the doctor that he could continue on his home health antibiotics we have 5 days left. And they didn’t send him to be admitted as long as all things stay the same. If a fever breaks through or any increase in pain to call. The bit about the elevated pancreatic (my words so I don’t have to keep typing amylase and lipase!) kind of took me back. Diet wise keep it low fat and if difficulty eating do liquids a day or two to help settle things down. They gave us free samples of Nexium and want him to add that for three weeks.  

I had asked before while in the hospital if being in the hospital took us off the offer calls. And then they said no it actually increases our chances. The surgeon according to Jane is “thrilled” when Kevin is in because he just wants him to get a liver. Erin is going to clarify what communication is going on with those things between Jane and the surgeon and Dr. Galati because we kind of didn’t get the same answer. A great friend reminded me as we spoke of these things that what does it even matter. Like, how can we even control the statistics and levels of Kevin’s numbers to be exactly where they need to be at the exact time of the offer. She said it’s totally up to Him and He knows exactly the time and circumstances. Goodness. That’s twice at least in one day of me being reminded that waiting is an ok thing when I am so ready to not be waiting, but, I got it. Kevin showed me a great verse while in the hospital about waiting on Him to renew our strength! Jane reminded me again to please if we have to go to an ER to use the stand alone one on Kirby and 59. They call the transplant team. Erin chimed in that she agreed unless it was any type of abdominal bleeding. When you are rushing and making decisions sometimes you just can’t remember. I mentioned it on the way down Sunday night but couldn’t 100% remember the intersection. So we go where we know. And we know Methodist. The last discharge we were standing on the curb waiting for Keith to pull in and I told Kevin isn’t this exciting! It’s like leaving for vacation!!! He replied well then that must mean this place is like home to you. He got me but as much as it’s not home it is now a welcoming friendly place because of familiarity and friendly caring nurses, doctors, and staff on that 7th floor! I have called that floor twice since we got home. And it has to be like home if you RECOGNIZE the voice on the other end out of multiple multiple staff who answer and call them by name! They answer our questions and sound so happy to help! 

The PICC line is killing us. I told all of them today that Kevin said he’d rather be in the hospital then have it. We give meds every 6 hours which once you finish it’s like 5. And then this cleaning and flushing and clogs and blood seeping back in the line. I told Keith it’s just scary! He was like why? It’s nothing! I said well it leads to his insides. Keith slayed me with well … so does your mouth! I think we both think it’s Icky. Kevin said he’d rather be sticked and sticked until he cannot be sticked again. He wants it out! They said leave it in after day 10 for about a week and then in clinic they will pull it. We have so many questions about it. But we will hopefully survive this “phase” as Jane keeps reminding me. Before she left I asked could I hug her! She let me:) As we left the office we ran into Aracelli too and she hugged both me and Kevin…Dr. Galati walked by and was like none of this in the halls! It is very clear to me that they are doing everything they can for Kevin! In John it says to ask in Jesus name:

“And in that day ye shall ask me nothing. Verily, verily, I say unto you, Whatsoever ye shall ask the Father in my name, he will give it you. Hitherto have ye asked nothing in my name: ask, and ye shall receive, that your joy may be full.” John‬ ‭16:23-24‬ I cannot even imagine the joy when He heals Kevin! I will ask in Jesus name to do so! 

March 6, 2017 ER room til 5 am

Home Health rescheduled for this afternoon. Medication set up to be delivered tomorrow. Spoke with Jane about the ER visit and she was encouraging and reminded me it’s not a sprint but a marathon. (Dr. Galati’s office at 11:10 was at lunch.) She’s just the go to now. There are so many people over him that she coordinates things best. I’m reminding myself of this more than anything else. Also, the ER doctor once we were clear to leave kind of begged Kevin in a please don’t get hooked on pain meds kind of lecture. We listened and Keith even asked what the signs were. But since we have pain meds at home we didn’t even ask for a script. So already we aren’t who you think we are. I know when I was telling this to Jane earlier I just cracked. I couldn’t hardly get it out. What a tough spot. My child is in pain. He gets meds. He gets lectures for getting meds. Yet he’s in pain. I want to talk to every doctor one day years from now when this is over and let them see that perhaps Kevin isn’t in their 80-90% stream of ER patients trying to get pain meds. Most of them Keith reminded me are on the transplant list because of their poor life choices. That is NOT US! And that’s what makes me cry. They all figure it out in the end. But days like this just make me sadder…

Kevin is getting to take an online class this semester. He’s already had one of the two offered. So today after all he went through all night he is starting New Testament survey and is excited about it! Such a good thing. He even had the textbook in the garage from his bins so we just went out to where we stored his college bins…three of them…and found it. Great happy moment for me today! Seeing him excited and driven about class is such a good thing. Take that you *”pompous”  ER doc😊 *Jane word…

March 5, 2017 ER 10pm

Kevin has been experiencing some pain today. By 10pm it was at an uncomfortable 8. So we gave tramadol. It seems to worsen so we headed to ER. He missed his 11:30pm Zosyn home infusion. I texted the home health nurse who was coming in the morning for labs and bandage change in case it turns into a long night. No sense in her coming if we won’t be there. 

So far it was a walk in. No one else in ER. Kevin had an EKG he passed the dr said with rock solid results. They pulled labs from his picc line. They did a chest X-ray and scan with dye to look for clots. This ER dr wanted to rule out other things. He was so sorry to see a 19 year old in here for something so serious. He’s not the only one. It’s almost more than we can take to see him in such pain. I start thinking crazy thoughts like goodness who is really figuring out this kid and how much more are we going to take!?! I want to sit down with the doctors and say so what do we know!? Is all this expected? Normal!? It’s all an Internal battle and I was just so proud of finally getting through IV home antibiotic infusions. We’ve all embraced it. Everyone except Caleigh has given him his treatment. So to go from we got this to I don’t think we have this and never will is just where I am at 1:40 in the morning Monday in the ER.  

3:00 am gave him norco for pain 

3:35 We get to go home. All ruled out ok…follow up tomorrow with Galati

They didn’t run amalyse or lipase though for pancreatitis because he said it wasn’t hurting there when he asked kevin. So. Who knows. Dr thinks is musculoskeletal … like a strain… but if it worsens or he’s not right to return. 

Hospital Stay 8 admitted Saturday Feb 25 to Thursday March 2, 2017 

March 2, 2017

Going Home With A PICC Line!

1:00 PM

Education on PICC line for an hour. We got to practice. Kevin gets medicine balls to infuse like baby Bailey. We got all kinds of info. If we get home today we are in charge of doing the next two infusions if home health nurse doesn’t make it until tomorrow. 

11:00 AM

Ok. I never updated yesterday’s second half of the day. I got to walk over to TX Ch and see Baby Bailey at one of her check ups. All the teams here were waiting on ID to chime in on what antibiotic to send him home with. Dr. Lin walked in at 4:30 in the afternoon yesterday and repeated his history. And with that came to the conclusion that he needed to go home on IV antibiotics if we were fine with that. A PICC line would be put in and home health would be tapped. Our first visit this summer with Dr. Feinstein in his office he mentioned this as well. At some point it’s just what is next. Augmentin worked to keep Kevin between visits until it didn’t. Levoquin was next oral antibiotic and we came into the hospital having just finished that one this time. He’s taken that a few times. She said the PICC line people work until 7 so it may be the next day. But within the hour they showed up at the door like Tommy Lee Jones at the site of an accident! (Fugitive reference) PICC line was in before Cole and I got back with hot tea from across the street. Today we have seen the floor nurse who has printed us great information on PICC lines. I had Kevin read then pass to me. Social Worker came in to ask a few questions and the case manager is contacting our insurance now and we are waiting for home health to stop in perhaps and educate further. 

I know Phuong from yesterday told Kevin that she is out today but to speak with Jane about a follow up visit for next week. 

Jane is our transplant coordinator and wonderful contact! She gave me this information when we spoke about a follow up:

•see Galati in his practice next week because he is triple booked at the transplant clinic 

•she is the PICC line queen since she worked the 7th floor for years before becoming transplant coordinator and her mom had a PICC line for 9 months

•she said purchase these things:

1-package of diabetic socks at cvs (cut off the feet and keep the picc line covered at all times to prevent pulling etc)

2-get “press and seal” 

3-get water resistant sports bandage wrap 

*to shower keep sock on, wrap with press and seal, then wrap bandage around that. 

***if the picc line bandage gets wet and home health isn’t coming then it needs to be changed because bacteria can get in from the wetness. We need to go to an urgent type clinic to get the dressing changed. 

?Questions I asked about this new situation. 

I told her his pain is not that much better. Is this where we will “live” now. She said no that it is just a “phase” like what he has been through with routine hospital stays and 6-8 weeks between. This “phase” will settle in. I told her I was a little bit apprehensive but she explained all things PICC line and I know we will get more education before the day is over so my head was somewhat unclouded after just speaking to her. Plus. I have Tiffany who will be all things PICC line too! People have been texting with PICC lines are the best! And it gets us HOME! Which gets my teenage boy sleep. Uninterrupted sleep. 

March 1, 2017

11:00 AM

Dr. Seelbach just hopped in. He ordered the CT scan and CTA (angiogram) yesterday to rule out vasculitis. Immune system attacking blood vessels. Anyway. He sits. Asks how’s Kevin feeling. I’m like how do the numbers look. He replied I don’t know I haven’t seen them yet. So I said how about any results from CT/CTA. He looked and then was like oh yeah! And hopped out. Then after a while came back in. He said he’s fine! No worries and the rheumatologist agreed last night all they are doing w him liver wise is exactly what she would do. So…possible go home tomorrow if ID and Galati’s team agree and he’s waiting to see which antibiotics to send him home on. 

He still has been alternating pain meds. Seems to be making it further apart. He did something to his left hand yesterday. The IV was changed Monday night to the right arm so they are watching it. Could be he slept on it weird. 

Tuesday February 28, 2017

I started the day thinking it was March! It comes quick enough already so let’s wait. 

We started the day with an answer for gall bladder removal by Galati’s NP Phuong. And it’s a No for now. Cole and I actually ran into Dr. Galati last night in the hall. Cole was leaving for the night and I was going to pick up a bite to eat. I was like hello Dr. Galati. If you are headed into Kevin’s room I will go back. Didn’t want to miss that. But it was late. We had already seen someone from his team that day. And I knew he was leaving town today so I said if you’re not that’s fine! He asked so what’s going on with Kevin. I said same old stuff plus they want to possibly remove his gall bladder. He replied….I will talk to Phuong in the morning… So all day everyone kept deferring to “the Chief” and I met him “accidentally” in the hall last night. I did tell him that Kevin just wants to know what Dr. Galati thinks. So this morning the revolving door of teams visited:

9:15 am Phuong. She will be back in clinic as outpatient NP which we originally met her as. Samantha will be the inpatient NP. It is a no for now on the gall bladder removal. “For Now” They are hoping this course of antibiotics will get him feeling better and they will “transition” for home. But she mentioned we will be in a few days. 

10:00 am I missed Andrea from Dr. Nguyen (ERCP) team I was out walking Kevin’s phone trying to hatch an egg on Pokémon Go😂 I figured it’s not decision day since Phuong came in with a No. Kevin said that they said for now they will watch this antibiotics and see how things go before a possible ERCP. Yesterday that was a no. And now it’s possible. But both teams are really not wanting to because it can cause more risk of infection going in by pushing debris up in those bile ducts while trying to also sweep them clean. And his last one was two weeks ago. 

11:15 am Dr. Seelbach (hospital trio shifts change between Carbajal/Dinikar/Seelbach) He is ordering a CT of chest and abdomen and tapping Rheumatology Dr. Popovich. He is concerned with Kevin’s ANKA markers and vasculitis. Of which we know nothing. He said it is part of Kev’s autoimmune disorder and vasculitis attacks major veins and could be damaging if untreated. I remember Dr. Carbajal kind of questioning himself aloud about is this visit PSC related or AIH.  

He asked how Kevin was doing and we replied: tired and rotating through pain meds. 

Also this morning a nursing student came in and asked if she could hear Kevin’s story as part of her education. Kevin said: sure. She is here every Tuesday for her clinical. I joked and said let us know if you figure anything out that we should know!!! 

6:00 Dr. Mona Migu Rheumatology 

She visited for an entire 45 minutes. She was very thorough. We liked her accent and mannerisms. She wanted to know the history and how and what he was treated with. She mentioned Dr. Seelbach contacted her and said yes Kevin has the 2 types of antibodies … and that he has atypical antibodies and his immunoglobulin levels are high but she is not concerned that it’s vasculitis. (Attacks the large blood vessels) She knew Kevin had CT scan and said she didn’t think we would ever see her again but would look over the angiogram and make a note in his chart with her cell phone number if anyone had questions. She gave us her card. She let us ask lots of questions between discussions. I did ask since she is a rheumatologist looking back on Kevin’s start and his diagnosis of AIH and the treatment TX CH used: immunosuppressant plus steroid would that be the course of treatment if we came to her office. She said yes. It is the exact treatment. She is not worried about the positive antibodies and said with AIH and PSC it is not uncommon to see them. She did say there is a completely aggressive treatment Retairemal (?) Infusion but she said that is very aggressive and usually results in causing infection. She is the second doctor today that said it is a mechanical problem (drainage) and it’s not uncommon for the spleen to be enlarged because the liver isn’t functioning. Platelets (flat shaped) get trapped in there as well other cells and that adds to risk of infection. It all made such sense when she was speaking. It’s a jumbled mess in my head now. But she examined Kevin and when she saw Kevin’s nails were bitten she said: Don’t Do That! Of course we asked the question to end all questions: how and why did his immune system ever do this!!! She said no real known cause. Your born with the predisposition to have it. Could be stress or infection. But no one knows. Dr. Pope said it best way back in 2011: Just Dumb Luck! But I figured I had an audience with a rheumatologist. I’m gonna ask! I know she also said Dr. Galati is the boss. He’s seen these numbers before and he is not surprised by them. She said usually the liver doctor handles this treatment just fine. She asked about the amounts of immunosuppressive medicine and we said it was as high as 250 mg and they kept checking the thypourine metabolites and it was within range. She said that is the highest dose she’s seen. But he’s not at that level now. It was nice to finally speak with a member of this team. We tried in the past to follow up with one. Especially after the October fall apart hospital stay. And they said they would look at our records and really never got back with us. They sent us to a fellow. So we didn’t even make an appointment. When we spoke with Galati and Erin about it at a follow up visit he said he was making an executive decision and we didn’t need to worry about it. So now that we saw them in hospital because of some markers triggering them and they have chimed in I’m guessing we are absolutely where we need to be. But for the record, I never like hearing a doctor say: you will never see me again….

Monday February 27, 2017

6:30 pm Kevin was given a breathing treatment. He has been coughing and it seems to be worsening. So Dr. Carbajal ordered breathing treatments. 

6:00 pm Dr. Lin is back checking on Kevin. (Infectious Disease Team) I asked Kevin what she said and he said she said, “get that bad Larry outta there!” But I was here and she didn’t say that! She caught up on his history but she remembered the dates of his hospital stays better than we did! And the things concerning him… she likes how well Zosyn is bringing down the levels but it may not be doing anything about the strictures. Or the pain. He is still piggybacking two different pain meds even though they are farther apart in the day. Once she heard the gallbladder is inflamed she did agree that it could be adding to all the other issues. And it could tip the balance it could put a lot of stress on the liver. Removing the gallbladder stresses the whole system. She is so friendly. I had seen her in the hall the last hospital stay and was just waking past her and she stopped me to ask about my son:) Kevin didn’t have that team last time. 

***What I will remember about this day is Tiffany and Bailey were down for a weight check and asked if I thought it would be ok if she stopped by. I said I WILL PAY FOR YOUR PARKING IF YOU BRING THAT BABY BY! (I’m not leaving the room on “figure out day”!!) So Bailey stopped in and Kevin and I were so happy for this visit! She’s so cute! Made our day!!! During this visit we got a call from Crown College. They went over on a conference type call what Kevin needed to do to take online classes. He looked this up last week when he was feeling ok. Today was the deadline to apply. And they break the classes up. Like Semester A and B. Since he has some already this time he has taken one of the two so he will take one class. They said they will completely explain the situation to the instructor and if Kevin has any problems or set backs then they will be as flexible as the class allows. This makes me so happy! These classes all will completely transfer but perhaps one day when we are looking back on this journey Kevin will be finishing his degree in pastoral studies at Crown. Praising and thanking Him for this direction in Kevin’s life. 

Liverpool is on so Cole and Kevin are in the zone!

2:00 pm Dr. Carbajal 

Doing well according to him as far as liver panel goes he is happy to see Kevin responding to this course of antibiotics. He is asking ID for input.  Here are the Bili levels by day:

Friday: 4.4 pediatrician 

Saturday: 4.6 ER Methodist

Sunday: 4.9 Methodist

Monday: 3.5 Methodist

We asked about his opinion of removing the gall bladder and he is hesitant. He said it really needs to be a “hot” problem. He’s seen recovery of this surgery go into liver problems. (I’m thinking ok. Let’s do it. Maybe he will get a higher meld score coming out which equals transplant …but that’s just me) He did say that Galati is the chief and he will make that final decision. 

12:15 pm Andrea popped back in and said for now let’s see how this course of antibiotics does and then they will re-evaluate for possible gall bladder removal. So she speaks to Phuong and Dr. Nguyen. Phuong speaks to Galati and Nguyen. So it’s a big square but circulating information on Kevin. So no surgeons will stop in today…. we are in a holding pattern. 

11:45 am Andrea NP for Dr. Nguyen stopped in. Explained that after his last ERCP he noted that next time possible gall bladder removal. And we are at next time and it’s been one and a half weeks. They are all discusing it! 

10 am Today is figure out day. The MRCP showed strictures deep in. She mentioned that Dr Nguyen’s NP was leaning towards recommending removing the gallbladder. They are pondering that… but I was like well if he gets a liver the gall bladder goes anyway:) hint hint

Galati leaves tomorrow so she will ask him. And we will wait to see what they decide. 

Sunday February 26, 2017

Keith and Kevin are giving me updates. I am packed and ready to stay and will head there after church. So far today they said Dr. Galati’s on call team came through. Dr. Nguyen’s NP came through. Kevin said she said they probably will not do another ERCP since they just did one but it still could be cholangitis or pancreatitis and are treating with IV antibiotics and for now liquid diet. After 9 am he is NPO because they want an MRI. 

They changed his steroid from prednisone to hydrocortisone and are pushing fluids. He can take 100 mg tramadol for pain and fentanyl for break through pain. 

Saturday February 25, 2017

Caleigh’s DI competition! It was a loooong day. We left the house at 6:30 am and were waiting to hear from Kevin’s lab numbers. The PCP office said that would call with them. They called Kevin to tell him they weren’t in but they hadn’t forgotten him. He let me know. He also needed nausea meds and pain meds. Once they called and told Kevin his numbers were elevated we knew we needed to get him admitted. I stayed with Caleigh to let her finish her DI day and Keith headed to the ER with Kevin. He got to be apart of that experience! I missed a call from Dr. Placencia while in DI. She had been calling Kevin because he’s 18 or older and have his cell listed as contact. When I could call her back she said she was just so concerned about him and that every time she called to check on him he said my mom is at DI. So I told her that yes I was at DI but we had a plan! And that Keith had him headed to the hospital. I thanked them so much for getting us the numbers so fast. It really did help us decide what to do. Overall we knew even without them if he worsened we would have gotten him in. His Bili is 4.4 from Friday and other labs are elevated as well. 

2:00 pm arrived at ER and triaged 

4:00 exam room ER the ER doctor came in briefly and got things going: labs and IV and contacted Dr. Carbajal. He came through and wanted an ultrasound and admitted him. Room 769 

At the awards for Caleigh (they placed 4th so are done) I saw portal messages with results. I peeked at the liver panel and his Bili was 4.6 

Caleigh and I headed straight to the hospital to see him just because I wanted to give him a hug! I thought his eyes looked feverish. He just looks like a sick little boy…. kids are always your kids even when they are old enough to sign their consent for treatment! Keith stayed the night. 

Friday February 24, 2017

Kevin has been out of the hospital for a week and a half but this week he hasn’t been doing all that well. He’s had to take pain meds a couple of different times and is tired, nauseous, and not eating well. We were able to see a doctor at Dr. Pope’s office because I was kind of thinking maybe he is viral or trying to fight something normal. We love that office! We started out with the np on a walk in and ended up with Dr. Placencia. She was very thorough. She actually was able to access Kevin’s medical records through EPIC! This is huge! They could see all his last labs and trends. I’ve wanted this for so long! Shared information for Kevin! Phuong had called also while we were in this office and mentioned what labs to have checked and to try to share them with EPIC so they could see them. Dr. Galati is out all this next week. The transplant coordinator was out all last week. So we just went to the one who knew him longest and he was out the afternoon… it all worked out though. 

Hospital Stay 7 — 2/8/17-2/14/17

February 14, 2017

We are being discharged! Admitted 2/8-2/14 

Noon

Dr. Carbajal was back in going over medications. No one has problems with Kevin being discharged. He needs a follow up in a week or two. The nurse had just given Kevin some pain meds and he is resting waiting on lunch and official discharge papers. 

11:45 Phuong stopped in next. We discussed all that happened and I asked her about what Dr. Carbajal mentioned and it’s just the nature of his disease PSC… the common bile duct was swept and dilated. The part about all the smaller bile ducts having “poor flow” of the contrast just went right past me. It is the nature of PSC… she wants him to be seen. Now Dr. Galati is in the transplant clinic every Wednesday. So she will let Jane know to schedule a follow up for him. 

11:30 Dr. Carbajal 

It’s his rotation starting today. He is checking with Dr. Nguyen and will see if he has anything else he wants to see before discharging. He mentioned three dilations…which made me want to revisit the report handed to us by Dr. Nguyen after the procedure.  

Awakened to Ray taking Kevin’s labs and letting us know there is a tornado warning. We will wait that out! 

February 13, 2017

6:00 pm needed pain meds alternating just to keep it under control. 

4:00 pm

Needed pain meds for side pain. Probably expected because of al that cleaning out. 

12:30 pm

Back in the room and hungry!

11:30am

Kevin Update: I’m in recovery with him. He did fine. No stent needed. They will keep him one more night for sure. Dr. Nguyen said his problem is not so much in the common bile duct where a stent would be placed but up in the smaller ducts too small for a stent. He dilated it. Drained and swept it out. But he said he looks good. 

10:45am

Kevin’s just gone back for the ERCP procedure. Dr. Nguyen spoke to me quickly before. He hugged me. Said he would look and see. Maybe a stent this time to keep that bile duct open longer. He will see. Praising Him for Dr. Nguyen

9:00 am

He is resting and waiting for the transport to take him to the ERCP. His last meal for soft diet he had cheese quesadillas with sour cream and salsa last night and I think it’s so funny that he said the sour ceam tasted like the salsa! He said it was just weird. Also one of the PCAs asked why he didn’t have the Grammys on and his reply was I don’t even know what that is! He was reading a book after his headache settled. She just laughed! 

February 12, 2017

They started his IV and reminded him NPO after midnight for the early morning procedure. (ERCP) He had a bad headache. So twice at the 4 hour interval he took headache meds (Feorinal or butal/acet/?) He takes it at home. It’s a step above Tylenol and liver safe. He experienced nausea and needed meds two different times and he needed pain meds at least twice. So it was a very good thing to be here after all. 

10:00 -11:00 am

We went from being asked if we wanted to be discharged today and the procedure Tuesday could be outpatient in one hour to never mind. A cancellation happened and now a Monday time is available Galati and Nguyen teams want him here. We were fine. We had that energizing info and they let us go dark before officially starting the IV again so we left the room! 

February 11,2017

Keith sent me updates:

“Kev is sleeping. The stinking machine went off every 30 minutes all night long. I was so mad! She would come in and thump it a couple of times and leave…. one time she just silenced it and left so it alarmed again about 30 seconds later!”

“Stephen came in this morning and changed the tube…no problems since! Idiot!” 

“Dinakar came by… nothing new…he just wished they would do the ERCP sooner. Wants Kevin up and walking around today”

When we got back up there we all walked around the hospital including gift shop. Kevin found some great pieces for Tiffany of which I snap chatted her to never let them shop for her! They have weird expensive clothes down there. Just sayin’!

February 10, 2017

Keith stayed the night with Kevin so I could sleep at home. He has a trip out of town so I knew I better take it! 

1:30 Dr. Nguyen’s NP Andrea came by while I was out to lunch with Tiffany. She told Kevin the ERCP would be Tuesday. And that his numbers haven’t gone any higher but they also haven’t gotten any lower. So without being in the room I can only put together that they want his pancreatitis type symptoms and elevated numbers to settle down. And/or they may just not have an opening until Tuesday. 

Kevin is hoping since he’s not having a procedure he can step up on the diet from clear liquids. We will see how he tolerates if they will allow it. 

9:00 am Phuong came in and there is a definite stricture shown on the imaging. She has contacted Dr. Nguyen’s office to see if an ERCP can be scheduled today. Kevin is in pain from this and is not able to eat much. His MELD score is now a 20. To my “MELD score calculating” knowledge this is the highest he’s been. She said she would let the teams know that… “hey…Kevin is in the hospital and if there’s an offer just reminding them he’s here and a good candidate.” (Something like that) 

6:00 am they came for him to get his MRI/MRCP 

Between pain meds and transport arriving we were awake and I said Kevin do you know what today is? (Beside’s Hillary’s Birthday!) I said exactly one year ago you called me from Crown college and said your friends told you at lunch that you were looking kind of yellow. I said send a selfie. You did. I sent it to Galati’s office and I will never forget being in a workout barre class and stepping out to take a call from Araceli his medical assistant. She said the doctor wanted to see you Friday that your bilirubin was a 5.8 and that we should know he wants him to stay “for a while.” Kevin and I recounted the hospital stays…in the dark hospital room early this morning we were going on memory we mentally listed six admits and Kevin commented: what a productive year. Each one as we listed the stays we could remember so well because life still happened in and around each admit. Great memories of family and or celebration was weaving through each one. (Spring break, Easter, Wedding shower and wedding, back to school…) Productive. Yes, we went from the absolute unknown to diagnosis to being listed for transplant. Now let’s get HEALED! 

Pain meds 5:30 am 8:30 am

February 9, 2017

7-10:30 PM the scheduled MRI/MRCP ended up not happening this evening. He will be first thing in the morning. He’s clear liquids still and tried jello and hot tea. Still hurts to eat but he was hungry. (Can hardly take this!) So 6:30 am they will come get him for that procedure. 

2:00 pm Andrea from Dr. Nguyen’s office to check on Kevin. They are thinking along the same lines as Dr. Galati. She is pretty sure Dr. Nguyen would want imaging first before an ERCP. She is hoping to order one for today and hope it happens today. 

1:45 pm Dr. Galati visit bedside

He was catching up. He did ask Kevin if he was disoriented? But he is not worried about his ammonia level. (I never even knew there was one but now I find myself telling Kevin to be sure to let me know if you are disoriented and then it dawned on me that he may not remember this conversation when/if he’s gets disoriented!) Anyway, he couldn’t believe we never went home yesterday. (After the routine clinic visit)  He was checking his numbers and pain level. He wants to first order an MRI/MRCP before doing an ERCP. He explained the risk of too many ERCPs with an infection possible behind a structure causing an abscess. He had someone with him from the Woodlands rounding with him and he introduced Kevin to her as his youngest patient on the liver transplant list. 

10:20 am

Dr. Dinakar isn’t worried about any of the trigger words I heard yesterday: sepsis, ammonia levels, lactic acid level. (He said he is not “encephalopathic” I think that goes with those words) He said usually the ER sees the number and it’s an example of technology getting ahead of us. Examining Kevin and seeing how he is comprehending takes that number to a different meaning. Makes sense. He mentioned he has fluid on his belly but will not do anything at this time. He contacted Dr. Nguyen and he will be by. Most likely he will have an ERCP tomorrow or the next day. 

Pain meds 7:00 am 1 pm 10 pm

February 8, 2017

Pain meds (fentanyl) 6:30pm 9:45pm

5:30 PM

He made it to the 7th floor. (771) Liquid diet but eating jello hurt. They are checking triggers or sepsis markers. I think because we came in through ER and his number one reason to be there was abdominal pain. So they mentioned lactic acid and ammonia levels. Something to piece together tomorrow. 3 things I don’t think we’ve ever had mentioned or given … I thought I heard his MELD score was 18. Earlier at the transplant clinic it was 15. So something is going on. (Or I can’t understand the nurses!)

2:30PM

We hadn’t left the medical center yet cause we took Tiffany to lunch. Kevin was hurting and has been on and off for the last several days. So I called Jane. She said while we are here just walk over to ER. If he starts feeling better we can hop out. But, his pancreatitis enzymes are elevated again. His liver enzymes are elevated as well so possibly be cholangitis. They already have admitted him and he is going to a room on 7th floor main. In ER Dr. Dinakar already came by. He starred IV antibiotics. Ordered fluids only. And is phoning Dr. Nguyen (ERCP) to have him check. 

10:30 am

Kevin’s visit at the transplant center with Dr. Galati and Jane the transplant coordinator. Discussed Kevin’s side pains and spleen side pains. We told them he has “hit the wall” several times this month and I told them I am now not calling the minute he gets a fever! (But we wait it out. See where it’s going.) Jane encouraged us in that every week when the board meets the surgeon Dr. Ghobrial mentions Kevin’s name. She said she cannot say this to every patient but Kevin’s name comes up so often. With every offer practically. She feels that is how he will get the best liver when a patient is about to receive one and then is too sick or has to decline it. He will be the next choice. She told us a story of one person she was calling. They didn’t answer. They didn’t tell her they would be out of town so she called the police. And they found them. They were in church! So, I told them I answer every call! I keep my phone where I can see or hear it…it will happen. It was good to be reminded of it. She will call later with his labs and current MELD score. I need to actually see when there is a follow up appointment. 

January 25, 2017

Dr. Escudier follow up. MRI over hospital in Dec lymph nodes no change. “Prominent lymph nodes” His platelets were 83 a little better. White counts 2.5 still low but she blames it all on his liver disease. She measured the enlarged spleen. Something like 24cm. She mentioned her 40 year old nephew had a liver transplant at 12 and is doing great. Good to hear! But we get the all clear from her. Especially since he’s being seen by other doctors. Unless they want him to come back to her we are listed as prn. 

January 17, 2017 Tuesday

Kevin went all last week just so strong. Working with a church ministry and just getting outside and playing soccer and basketball with kick:) Then, Monday night he came in and said that he’s actually had some side pain the last two nights. I wanted to know what he didn’t tell me when it started and he just said because it’s just like annoying. He ran a low grade fever of 100.8 and I am thinking we will be leaving for the ER really soon. But, he went to bed and has powered through whatever it was. 

January 12, 2017

Follow up with Dr. Galati went well. Nothing at all revealed in the scopes to be concerned about! Good news:) In 4 weeks he wants Kevin to be seen by him but in the transplant center. Jane will call us and schedule this. 

January 6, 2017

Kevin has a colonoscopy today at 7:15 am arrive at 6:15 am down at the medical center at Texas International Endoscopy Center.  

January 5, 2017

Kevin has a colonoscopy tomorrow so today is prep day. Last time he had one was at Texas Children’s (Dr. Olive for Dr. Walsh) before crossing over to Texas Liver Specialist on November 18, 2014. He can start the day on liquids only. Then starts the moviprep at 4 then 8. This prep is different than last time. I told him because he’s an adult! What do I know. We spent the day moving Kevin into Tiffany’s old room: he now has lots is space, Tiffany’s stuff to Caleigh’a pink room, and Caleigh to Kevin’s old room! Great distraction!

January 3, 2017

Dr. Galati’s office called and wanted to see Kevin this afternoon. He went over joint pain and blood in his stool. He wants to scope Kevin this week. Friday Kevin will have a colonoscopy. So Thursday is prep day. He spent a good thirty minutes with us. He had mentioned the next time Kevin experienced this he would scope. He mentioned ulcerative colitis not saying he has this but he said it sometimes goes along with his PSC. It’s good to know he will get checked out quickly. 

Joint pain / diffuse arthralgia was mentioned as a kind of traveling arthritis. Not saying he has this. Keep an eye on it. Especially let him know if there is redness or swelling. It was on and off about three weeks. Mostly ankles and knees and elbows. None today.

January 2, 2017

The ER doctor said he spoke to Dr. Galati’s fellow and they agree since the hemoglobin is 10 we can go home. We got here at 12:30. It’s almost 6. We are waiting for the IV to be removed. They never did IV fluids. Just labs. So they said we need the discharge papers and a nurse to remove his IV. But goodness. We were never admitted I told her we never left the waiting room! She said it’s the same. Crazy stuff happens here. Funny and crazy stuff. But. We want out! 

Here is why I know we needed to go to the hospital. Neither Kevin or I have laundry done:) But, he just didn’t look great yesterday. He was quiet. I knew he wasn’t sleeping. And I knew he was noticing blood in his stool. I knew we were calling today. The lines were all down. We had a storm. So one call service told another call service that we called. Dr. Galatis office is closed today. It is Monday but observed New Year’s Day. I did hear from the doctor on call. He looked at Kevin’s file after asking several questions and said he wanted Kevin to be accessed and the only place to get that done today was down at the ER. I said well what if we wait and call tomorrow when the office opens. Because I only called today thinking it was open:) He said because they cannot tell how much blood is lost we just really need to go. They will do a hemoglobin lab. He mentioned his baseline lab is showing 8.5. He said if it’s higher than that they will let him go. Then we can call Galati and schedule a scope tomorrow. If it’s lower then they will admit him. So. We are waiting for the results now. Which means I have time while life isn’t happening all around me to update this page and check out the pokestops in the medical center!

Jan 1, 2017

Kevin has not slept well lately due to being up all night with diarrhea and has noticed blood in his stool. For the record I would guess maybe in November the check up with Dr. Galati he said if this happens again to call in and most likely he needs to be scoped to band the varices. (Spell check doesn’t like that word!) But I remember it was the EUS with Dr. Nguyen then the Follow Up with Dr. Galati that he explained the watermelons spilled on the road for us to understand esophageal and rectal varices. And I hated to hear it then. It took me a while to update that one because the images it made me think of. The blood is finding any channel to flow and sometimes the channels are not strong so bleeding can occur.