December 26-27, 2016

I tried to reach someone at the doctor to ask about the joint pain. It seemed to get a little better. I sent a portal message and left messages. I did hear back from Nicole because it’s a holiday week and most were out of town. Erin Yates called us back just to hear more details. She said she would speak to the hospitalist and call us an. Dr. Dinakar gave her information for us. He said up to 2,000 (?) of Tylenol per day for joint pain. Only Tylenol. I told her he liked Advil and she said what I knew: no no no. So it was funny. She left us with well tell Kevin to pretend to take Tylenol and if it gets worse get to the ER and Dr. D who we’ve seen in the hospital before would be on call and familiar with him. We never went in for joint pain. They said it could be viral or (lost my note) {found the note: virus prodrome and yeah no wonder I don’t remember it. I think it means random and can go away on its own! But I did Dictionary . Com it and had to look up the word it had defining the word. I think these people could speak simpler. Just sayin} but some random word. Anyway. Who knows. He did tell her if he doesn’t move he doesn’t hurt! Problem solved. Don’t move! 

December 25, 2016

After opening presents Kevin looked like he wasn’t feeling well. He was having pain at around a 6 dealing with joint pain. 

December 20, 2016

Dr. Galati Follow Up Christmas Week

Energy level is good. He played soccer recently. Some diarrhea. He asked what he did during the day along with any thoughts on school. We pointed out if you chart Kevin’s in and out of hospital along with how he feels on a given day up against a semester it would be difficult to keep up with class. He asked how many admissions he’s had since last February. (I need to go through and number these) We randomly answered 6-7 not counting ER trips that he’s not admitted. He asked how is the rest of the family doing with this. How are we doing with this. I was flat out honest. I told him if we keep talking it would make me cry. He’s had experience with me on this one for sure, so we moved on. I will say it’s just to tender. Anyone can ask about Kevin and it’s just so close to the surface of my heart strings that tears just form. It is what it is. Dr. Galati called the situation “a burden.” That is an inside family joke because the older kids always referred to Caleigh as “the burden.” I joked with Kevin and said so now you are the burden! But really it’s not a burden. It is hard to explain this but we just handle it. We accept His will and perfect timing for our lives and trust Him completely with all things. But lots of people refer to “it” in such a way. I guess maybe one day we will look back and perhaps call it that. But for now we anticipate Kevin’s healing in His hands. Life happens all along the way. 

Araceli was getting the laptop up and running as Dr. Galati asked questions about his MELD score and if he was denied exception points. His current MELD score is a 16. He was denied exception points but since then he has been in the hospital double the times since the first letter to the board was written. He was texting Jane the transplant coordinator. Kevin and I usually have a list of questions. This time he only had this: What’s. Next?

Dr. Galati once the laptop was up wanted to ask about the previous hospital stay the first week of December. He asked was the pancreatitis symptoms better. Kevin said yes. It could have possibly been Imuran related or gallstone related or even sludge. While in the hospital he did have another ercp. But he’s back to normal tolerating a regular diet. On the PSC side of things he’s awaiting transplant with intermittent fevers. He’s finished the 7 day antibiotics. 

Where are we now: this is the watch and wait and hang out and stay close and answer every call even if we don’t recognize the number time. The doctor said chronically he won’t feel right but to look at the things we can fix. Even though there are not a lot of fixes he compared it to a machine that goes on the blink every once in a while and you kick it and put a new fuse in it until it gets going! He acknowledged what an odd situation it is to be in waiting for that shoe to fall off. He doesn’t have the luxury of saying hey, I’m clear, I’m done, I can get on with my life. He said we are tethered to them and they are tethered to us:) It is the nature of the AIH and PSC over lap. Tricky cases. Transplant is the answer ultimately. We discussed or rather I asked if we could be called even knowing 99% chance we might not be transplanted could we just be in the waiting room for the incase:) They have that system in place already. And I know we have been in the hospital and been told we were very close and one of those identified “back ups.” He told Kevin to stay out of the hospital during Christmas while he was out of town! We will see him in 4 weeks. (For the record Kevin had complained about ankle and knee joint pain but I dismissed it as soccer soreness and bike wheelie popping in the side yard…)

Hospital Stay 6 —12/1/16-12/8/16

December 8, 2016

We made it home! Hopefully Kevin will listen to his doctor and stay away for a year! 

10:15

Seelbach came in to look at him. Said he could go home. He said he hasn’t seen the numbers yet. Isn’t too concerned about the numbers. He likes to look at the patient. So. The wait for discharge begins. Tick Tock Tick Tock. For the record one week ago tonight we spent the entire night in the ER. We will be happy to get home!

December 7, 2016

11:00

Phuong came in and we talked a bit while Kevin slept. She explained the results of the ERCP. She saw the report and spoke with Dr. Nguyen. He did say it was harder to “navigate” the ducts. She said that’s the part of this disease that she hates so much. She said they feel helpless. She knows I do. Then Seelbach came in while she was here and they discussed watching him today “mimicking” home care so tablets and off IV. Then tomorrow if all goes well they will send him home.

She was such an encouragement whispering not to wake Kevin and just discussing anything I asked. Explaining things. I told her Kevin and I list questions before and here we go again with, so, what happened. Why did he get pancreatitis? 😂 We’ve been here all week but why again are we here! It does all make sense in a small way. But she said to always call in with any symptom. I asked does that Bili level seem to be one of the best markers? She said yes if it’s trending up. It could be a sign of strictures or infection. Either way. He needs to be seen. 

December 6, 2016

Treasures of Darkness (from Isaiah 45)

ERCP at 3 but before that we had visitors. Christopher and Anna Claire had appointments across the street of all days so they made a quick visit to see Kevin. So cute. They made cards and had to see Kevin at the “doctor’s house.” Cole brought up Kevin a book of magic card tricks which was a perfect distraction for not eating all day along with the biggest stack of cards written by Hillary’s kindergarten class. Such treasures in that stack! They don’t even know Kevin but took the time and drew and wrote him get well wishes. Classic cuties!

The ERCP went well. No stent was needed. We may get to that point in the future but for now Dr. Nguyen said dilatation works best for Kevin. There were strictures. Significant blockage. But he swept those bile ducts clean. Mentally we think this was his 6th one. (Will fact check that later!) It doesn’t matter how familiar we are with it. It just never gets any easier watching him be pushed back. That’s why when the doctor hops out by Kevin in recovery and explains how the procedure went to me and what he did I am just so thankful and happy and relieved…did I say thankful!!! These skilled doctors. God’s great guidance and healing and protection. It’s just overwhelming and joyful all at the same time. I really need to send Keith back for recovery. The doctor is probably like look lady I just swept out your son’s bile ducts you can’t be expecting me to wipe your tears too! A friend sent a great basket of plants with balloons and of all things right when we needed it, the gentleman delivering it found us in the waiting area of the ERCP! How does that happen?!? Like. We live in the hospital room. 7th floor. For a smidge of a day we hop over to who knows where (we stick to the people transporting Kevin in his bed like glue! You should see us all crammed in the elevator!) 

We are surrounded by so many praying and faithful friends and family. Bekah brought up dinner and more than food we just, somehow, in a hospital room had a fun night of laughter and visiting. Tiffany hops over and we watch baby Bailey kick, I am thankful for my beautiful family!

I am reading a book given to us by PC at a previous hospital stay: Off Script what to do when God rewrites your life by Cary Schmidt. (We chaperoned a teen camp he spoke at and I had heard part of his story) It’s been a tremendous encouragement to me. I’ve been taking pictures of the pages that speak to me because it really was Kevin’s and I hate to mark up someone else’s book. That book is a treasure, today we were blessed with so many treasures but even if no one knew we were here we know that He knows and loves us and is completely in charge of this rewrite of Kevin’s life and that is enough. 

 “And I will give thee the treasures of darkness, and hidden riches of secret places, that thou mayest know that I, the Lord, which call thee by thy name, am the God of Israel.” Isaiah‬ ‭45:3‬ ‭

December 5, 2016

6:45 Dr. Nguyen came by and talked about the ERCP tomorrow too. He is considering putting a stent. Kevin had one the first ERCP. It didn’t go well. But no matter what with a stent or not he still returns. If a stent then he has to return for removal and replacement. Without a stent he has been returning for ERCP procedure to help with infection and cleaning out the bile duct. So. He will see when he gets in there. 

12: 45 Dr. Seelbach came in. It was good to see him. He was chatty. He told Kevin looks like you just need to get in the mind set that this is going to happen almost every quarter. And if it doesn’t–great! He said his amylase and lipase numbers were the highest he’s ever seen. He particularly questions more about the pain. Where it starts. How it feels. He and Kevin connect over that. (I don’t like re-living it and it didn’t happen to me!) He asked if the pain makes him lean over and focus on that only. I was like yep! He does the “double over old man walk.” (Truth be told Keith always tries to film this! Such a bad dad!) But it’s an outward sign to us at least to know how Kevin is feeling without saying a word. 

12:20 Phuong came by:

ERCP either Tuesday or Wednesday. It still needs to happen because of the strictures in the duct and the dilation. She drew the picture because I was like isn’t dilation a good thing. Opens. Flows. Well, the stricture / blockage / caused the duct to open the opposite way. So it flows back ward into the organ. (Bili is elevated) Got it.

I also asked transplant questions. How many does she see. She said sometimes they go weeks without one and sometimes they have 3 in one day. She will check to see and confirm with Jane our coordinator to be sure where she shows Kevin on the list. 

7:00 am We slept straight through the night! No blood draw at 4 am. “They said” there’s a new protocol in place. If the liver patient doesn’t have a procedure that day then blood draws can wait until between 6-8. It’s an attempt to let patients get more rest. (He joked and said it’s getting the doctors on board because labs post later and if they don’t see them they start ordering more STAT!)

December 4, 2016

9:30

We walked Keith down and ended up staying away from the room for 45 minutes! It seemed like 10. But Kevin was worn out. Actually experienced some side pain once we got back up and he took tramadol. Just recording it to see if it correlates with diet or walking.

5:00 I came back home with Cole and Caleigh to shower and get more clean clothes for Kevin, and Keith sent me this update:

They brought in his two bottles of protein at 5:25pm

Dr. Carbajal came by. He said the MRI showed some scarring and dilation which is typical from PSC. Pancreatitis seems to be responding well to typical treatment. We will see how he does on some more solid food. Dr. Nguyn wants everything calmed down for the possible ERCP on Tuesday (if they do it)

Possible that past ERCPs could have caused the pancreatitis (scarring, etc)?? They aren’t sure….

11:00 He took zofran for nausea. 

10:00 am His nurse disconnected the lines so he could walk around and get some exercise. He actually didn’t get far before he was feeling nauseous. So we sat downstairs and looked out the window at the wall of water then he returned to the room. Progress.

The nurse practitioner for Dr. Carbajal was in early. She also was a wealth of information. Just discussing his symptoms. She was encouraging sharing patients she’s seen before with this crossover of symptoms and diseases. She said to document all the recurring infections. She saw his Boston cup and connected over that. She use to live behind Fenway. So. It was good. He’s been up since 6:30. He was hungry. It took an hour and ten minutes to get the food. Liquid. Food. They are seeing if he can add soft food.

He slept fine. He didn’t need a pain pill. The “shadow nurse” ended up having to redo labs for whatever reason because his blood clotted. So awake at 4 then 6:30. So we ordered his breakfast. Cream of wheat, chocolate pudding, orange sherbet, 2% milk, hot tea–that kind of full clear liquid diet. It’s Sunday. He’s still basically resting his pancreas because even though the numbers were significantly lower they were definitely still elevated. So he’s easing back into solid food. 

December 3, 2016

We had a visit from Hillary she helped us get moved to the new room. This one has a shower. All the rooms we’ve ever stayed in have had their own showers. So it was weird not having one but fine. Then Keith brought Cole and Caleigh and they brought games. Unfortunately for me we hadn’t ever played one of them so Keith read ALL of the directions to us. Every word! Lol (it took an hour and a half to hear them!) After his procedure since he was tolerating clear liquids Dr. Carbajal allowed a full clear liquid diet. Basically he’s still hungry on this… 

10:45

Looked up some of his numbers in the portal:

Lipase 1287 U/L standard range 13 – 60 U/L

Amylase 1018 U/L standard range 13 – 73 U/L

 Bilirubin 3.3 standard under 1.2

There are many many more but the first two above explain and confirm pancreatitis which is why he’s on nothing by mouth to rest the pancreas. And will add back foods after the MRI starting with clear. His cafeteria lady today already brought him a tray. We were like. He can’t eat. She said I know. But I ordered him up some so when he gets back he will have something and she added so don’t touch anything now! Lol! 

10:00 MRI/MRCP was suppose to be first thing and it’s 10. But his nurse called and told them he’s NPO until this. So they said they are coming for him. Kevin has been sending me recipes that look good. Poor kid is hungry.

4:00 am tramodal for pain 

December 2, 2016

8:45 pm Meds plus tramadol 

Dr. Ngyun came by at 3:45pm Friday

-Saw interesting ultrasound that they have not seen before with Kevin

-Could be stones in the ducts, but it could just be air (they look alike in an ultrasound)

-Will see better in the MRCP later today.

-Will let pancreas rest the rest of today, maybe clear liquids tomorrow. If pain starts back up, then will have to back up again with no food or liquids.

-Still plan on ERCP Tuesday…

2:30 Andrea Washington (Dr. Nguyen’s NP…he’s the ERCP procedure doctor. Gastro doc) She was a wealth of information! Answered so many questions. Explained what biliary pancreatitis is. They want his pancreas to rest. Kevin described the pain to her as sharp and stabbing. All the ducts are in the same vicinity and one can irritate the other. The pancreas does endocrine and exocrine. It helps digest food coming in and out. Since it is irritated it needs to rest. That’s why he’s not eating or drinking today. They will do the ERCP Tuesday. The ducts being so close together they don’t want to do the procedure too soon or it could actually irate it to cause pancreatitis. She was glad we came straight in. All his labs pointed to pancreatitis. Elevated lipase and elevated “something else” 🙂 We told her when they came in the morning and said all this we were just so tired we didn’t quite put it all together. Now we get it. 

10:30 Food no food

Phuong and Dr. Carbajal just said kev is NPO. No food or drink. He has pancreatitis. Possible billiary pancreatitis. Like maybe a stone passed through biliary tree (?) Food and drink irritate it. 

They saw the lipase level elevated. Dr. Nguyen wants ERCP next week maybe. MRI today of bile ducts. Ultrasound definitely showed sludge. 

*I could not make sense of stuff. Just so out of it. Poor kid. He ordered breakfast cause they called off HIDA scan. Before he awoke to eat it they saw results of film and said NPO. they want to settle it down. 

7:00 in normal room on 7th floor. Home away from  home. Tired. 

4:30 am Ultrasound of gallbladder and abdomen 

4:00 am zosyn IV antibiotic started

3:45 am

ER doctor confirmed it’s the usual stuff. He’s admitting him. Still in ER room. Waiting on room assignment. 

“The Lord is good, a stronghold in the day of trouble; he knows those who take refuge in him.”  Nahum 1:7 (thanks Ruth!)

1:30 am 

Kevin made it through triage. We are in an ER room. He’s nauseous. Side pain of 5. And I’m seeing very yellow eyes. It’s Friday morning. My absolute least favorite day to be at the hospital. Especially if he’s going to be admitted. It just seems like nothing happens until Monday. But. It’s early Friday! So here’s hoping. 

December 1, 2016

9:30 PM

Keith texted me and said that Kevin was taking a tramadol with a side pain level of 6-7 and going to bed. He didn’t end up staying there. By midnight he was hurting and asking to go down to the ER. 

5:00 PM

Kevin’s had on and off good and not so good days. Not so good: low grade fever and nausea. Good days: he’s wanted to go Christmas shopping. He’s walked the Ren Fest. He’s played basketball. Helped at church in the teens. He’s been planning or thinking about the young people between teens and college age wanting to reach out somehow to them to get them back connected. I love where his heart is. It’s back on a baseball field. Only this time possibly softball. Just something to connect with them. I heard him mention how much the field rentals are in our neighborhood and he came in with an old baseball glove trying to round up some worthy equipment for a pick up game. All the while I’m thinking I hope you don’t get hit in the spleen with a ball! 

Dr. Galati Follow Up visit Thanksgiving Week

We had questions about the strongyloides test. Remember I was only on the edge. Glad I didn’t jump in. He said he read an article recently and it all came from that thought that people from areas where this parasite is found are among us. So the possibility is there even without traveling to the countries where they are common. Now they are implementing this lab for all transplant patients. Kevin’s was negative! And I did ask could this be a false negative! He’s not concerned about them at all. 

He mentioned his serum albumin has for the first time maybe ever — dropped. It’s a measure for protein. He wants Kevin to be aware of his protein intake. (80-100 g a day) So we got a nutrition talk– add more egg whites to the two eggs (carton by the eggs) yogurt, nuts, beans, beef and chicken, smoothie w protein powder. He didn’t think he was malnourished and joked about us feeding him three peas under the door to his room while we ate steak! But he thought he had lost weight and that number was low so we got the talk. 

We went over things that happened to him since we last saw him. Kidney stone. Random fever. If he has another kidney stone and they don’t administer pain meds once we walk in the ER he said to call their office! They should give pain meds! 

They are transferring all things IT to a cloud from a server. They sent me the last labs and I was able to pull them up on my phone. Courtney calculated Kevin’s MELD score which was an 11. (Not getting us any closer to that liver but the recurring infections are…)

He sent us with labs to Smith Tower and is especially checking the bile duct cancer marker. He’s checked it before. He’s keeping a close eye on that. 

Very thankful for this doctor and his staff! 

November 21, 2016

Thankful that the fever never returned. Saturday he did experience some nausea. We got him out to play some cornhole because it was a perfect day outside! He didn’t attend church on Sunday due to a headache and we were heading to Lufkin that afternoon to meet and pick up Mam Maw from Aunt Sheila. So he felt like riding and making that trip. It could be because exactly half way is a restaurant called Ralph and Cackoos. I don’t cook that good or do seafood. So it’s worth the trip for Cajun seafood lovers. Today he felt up to playing ultimate frisbee with friends! We have a follow Up tomorrow at the medical center seeing Dr. Galati. Hopefully we will get some answers to that blood test from last week. 

About that portal. They have replied to me. Then I happened to ask Kev if he got any reply from the help desk because his email was used. He actually did hear LAST THURSDAY!!! And it’s all their fault. They have Kevin’s information in their system twice and they apologized and said we should be able to open a portal in two business days. This is why 18 and older kids really cannot be trusted with their health information! I really could box his ears in. But. He doesn’t check his email. EVER. One step closer to getting it. 

November 18, 2016

Kevin awakened us at 3:00 with fever of 101.5 along with nausea and chills. We gave Tylenol and called into the doctor. Dr. Galati said to treat the fever today with Tylenol as long as it is responding. If fever persists tomorrow he wants him to get in. 

November 15-16, 2016

This one gets two days because it is still unsolved. A simple patient portal. Galati’s staff last visit asked if we had a portal set up to LabCorp because many times patients walk in and say the labs are in because they’ve already seen them. We don’t have one but let me show you the bubble on my iPhone labeled “portals” because Kevin has so many! I want a portal to end all portals!!! So after the lab tech drew all the viles she needed I asked what was the “strongyloides” one? How long is the turn around? And she said she has never seen that one before. Then I asked is there a patient portal for LabCorp that we can register for. She found us a pamphlet and said it is so easy. Just follow these instructions. I was elated! Another portal to get information and organize all these labs! Perhaps our days of taking the printed labs and inserting numbers in a spreadsheet are over! We can click the portal and see them all… EPIC EPIC EPIC (not enough EPIC’s to describe this feeling and failure all at the same time!) Its all about how they connect their health vault with Microsoft accounts. And who knew we already had a Microsoft account. But once I started the “simple process” let’s just say we need to go back to Galveston to that couples retreat because it got ugly! When I’m stressed over “simple not working out,” my frustration is just that. Frustration. But people around me think I need a padded cell! And I have a very difficult time explaining my frustrations without making the person hearing it think I am frustrated with them! 

Ok. 

Keith. 

Let’s just get it out there. Mr. Monotone Jones himself. He can calmly relate the hysterical to a room full of monkeys without so much as inflecting his tone of voice. 

Seriously! While I on the other hand, have been accused of being, what’s the word, animated. They say I’m too –animated. All I did was go to the website. Click on create an account. It said we already had an account with that email. So I went to my “written mind” that secret place we all have access to that we list all the username and passwords to all the places we have usernames and passwords. I’m talking from Walgreens to Costco photo center. And there wasn’t anything Microsoft which means I didn’t ever knowingly create an account. So I hacked into what would be ours that one of my family members must have randomly done. Got the password reset so I could get moving on the LabCorp portal. Only to get everything in. Including Kevin’s last four digits of his social for it to tell me INVALID. 

Something did not match with their records. So in my infinite knowledge of creating patient portal accounts I thought oh, it has to be Keith’s information like birthdate etc. So I changed it to him and thought well we can add Kev under this. INVALID message again. 

This went on and on. I redid. Retyped. Thought it was me misspelling something. Got very frustrated. Said these words to Keith because he didn’t seem as passionate as I was about getting this portal open!! We’ve been getting Kevin’s labs for five years and not once did anyone ever tell us they had a portal. 

Give me this portal! 

Keith couldn’t remember if or why he had ever opened a Microsoft account (which includes Xbox live so the children should be glad I didn’t drag them from their sleeping beds!) instead I told Keith with enunciating and teeth gritting that I was going to be putting his birthday in the system and it will show me you were the creator of the account! 

He went to bed. 

Can you even believe this! I was going to conquer this portal business. I cannot even tell you how many accounts I almost created. 

INVALID means INVALID. 

I gave it up for the night. Well. Early morning. Then got back at it sometime the next day but dragged Kevin into it. I made him sit back with me because after all he is 19. So part of the INVALID could be that over 18 thing. Who knows. I did not want to use a different email but decided to try Kevin’s email. He could have his own account because he is Kevin and it is all happening to him. 

With great anticipation we filled out the easy step by step process using Kevin’s email and it said 

INVALID

So I started the process for speaking to a human behind the portal help desk. My cell phone has decided it will drop calls or sound statically only while in my house and only sometimes. I was on the cell phone and went through several holds and transfers to finally get to the person who could help and she couldn’t hear me! I was trying to tell her to call me back on my land line. 

We were disconnected. 

But I walked straight through the house. Found two dead home phones and then one with some life and started the entire process over again. I got through to a sweet soul who has now “opened a ticket” for me and is having the real tech support call me. 

On the home phone. 

No call yet. No LabCorp patient portal for Kevin to speak of. 

It’s. All. I. Want. For. Christmas.

November 14, 2016

Keith reminded me that we haven’t heard back from the frozen stool sample. It was something I checked the portal often last week thinking they would put the lab results in there but actually let the weekend sneak up and knew it was a Monday call. So after leaving Araceli a voice message that we were checking in and hoping no news was good news just touch bases when she was available. She called back. Asked me to get him to labs because it has been time plus his next visit with Dr. Galati is next Tuesday before Thanksgiving. Then she said Dr. Galati added this one himself and told me to please write down the name to know what to ask the lab tech to be sure they see that order. She said she has never heard of this test before and had me write “strongyloides igg antibody” and didn’t even tell me one thing about it other than Dr. Galati is still researching Kevin’s elevated eosinophils (a white blood cell). I’ve had friends and family google it and will not list here anything because we see him next week. It’s just a test. Not a diagnosis. And why jump in when there isn’t even any water in the pool to swim yet. I’m going to just wait and relax by the “edge” of the pool and ask all my questions next week. We. Have. Questions. We. Have. Thoughts. 

November 3, 2016

Kevin had been having diarrhea last week like 4-5 days. So we called into Galati’s office just to inform them. Usually one can let such stuff fly by. But they want to know stuff like that. Blood. Vomit. Nausea. Chills. Fever. Diarrhea. (Basically the same list we tell our kids they can wake us up for. Ever!) So they said the doctor wanted a stool sample and to get by LabCorp when we could. 

Poor Kevin! 

So. We pick up the kit. They wrote a sticker on the container that said “frozen” and Kevin said the guy said bring it frozen, but I figured that was because it was mid afternoon and we were taking it home. Who knew that Kevin could produce a sample so quickly. In the hospital when they ever asked for one it took him days and every single person that walked in the door would ask anything yet? So we brought it right back not frozen. And they sent him right back out with it and said to freeze it and return it tomorrow. I started with poor Kevin and I will end this update with poor Kevin! (Now we know why people have “garage refrigerators”) However to be around the two brothers throughout this entire dilemma had me laughing tears. Potty humor at its peak! But, POOR KEVIN! 

November 1, 2016

Dr. Escudier called. I was in the carpool line. I will gladly pay the fine for answering calls from doctors! She saw his cytology reports and had to call because it was good news nothing genetic or anything to worry about. Completely all clear. She said she remembered us and just thought we could use some good news! I was so happy! Especially after the kidney stone all nighter a few days back!

Also earlier in the day we saw Dr. Pope for a follow up from the kidney stone. We called down to ask where do you want us to follow up. They said PCP was fine. Dr. Pope’s follow up went well! He is referring us to a urologist. We mentioned we had seen Dr. Sukin back in the day. And I think he said Angela will be getting with me. To help make that appointment. (Reminder and note to self follow up here.) He checked his urine sample and things looked better on a kidney stone front with ketones (?) and blood in the urine kind of front. (I will be blitzing anyone I know whose had this experience!)

October 30, 2016 1:30 am to 7:30 am

Kevin seen in Willowbrook Methodist ER

Kevin awakened me at 1:30 am in a lot of pain. He said it wasn’t bile duct or liver but more starting in the right testicle and shooting up his right side. Yikes! And yikes! Gave him tramadol then just decided to head to the closest Methodist ER since one time they mentioned to us if it’s an emergency get to one close (because hospitals are everywhere now) and if needed they can transfer him to the medical center. I will admit I was concerned something from the torsion surgery of 2011 went wrong all these years later. And as soon as we walked in they saw some of his history and ordered an ultrasound of the groin area. His pain this entire time on “that pain scale” was a 10+. So, as we sat after triage Kevin wanted me to go ask if there is anything they could give him for the pain. (At the time I didn’t know why the lobby was full) The nurse said that we would be taken back soon and there was nothing more that they could give than what he already had. The ultrasound ruled out a couple of things. So, back out to the lobby. We waited a bit more then got right back. They did a CT scan. Gave him morphine. 20 minutes later the pain was back at a 10+ so I walked out because Kevin asked if I could see if they could give him anything else like when he’s in the hospital with a painful bile duct infection they alternate pain meds. I also asked if they could see his entire history. They hadn’t seen it yet so I tried to fill them in quickly. It’s just the worst thing seeing him hurting and doing nothing! I haven’t had a kidney stone but know enough people who have and they all agree how painful it is. Goodness. The pain meds piggybacked finally worked or the stone passed. Who even cares when the pain is gone. The doctor said there wasn’t a stone actually seen on the scan in the right side but there is a stone in his left kidney so they know he’s a stone producer. [Also before he came home from college last February he went to the ER in Knoxville with his RA and Dean of students for this same pain.] 

We walked in asking for pain meds and being judged (my thoughts) and by the time we walked out they completely understood us. I know pain med addiction is a huge problem so when one really needs it they have to put their guard up. The nurse was funny and told us to stay away from the “Rave” going on over at the racetrack because they have had a dozen girls overdosed over the course of the night. We had seen them in the halls as we went in and out of the procedures and I was thinking in my own mind that if they who basically with “self inflicted” injuries delayed Kevin’s need for medical attention then I know why they place two officers at the entrance to the ER. They would have slapped the cuffs on me and hauled me to jail for how much I felt like going off on them! My son who didn’t ask or do anything is in so much pain!!! And I did not handle it well. Not at all. But I didn’t go Mama Beth on anyone either. Keith was with us and I would text him and say I don’t know how much more Kevin can take. Then Keith would reply well, he’s not pulling his hair out yet. He had been with him after torsion surgery and the pain was off the charts and Keith said he was pulling his hair out. And that was suppose to help me! Such a horrible horrible night. Poor Kevin. I did nothing and went through nothing and yet have been flatlined from this! The nurse even brought me a warm blanket because I think he thought I needed treatment and that’s ALL he could offer:) Once the pain stopped and the stone supposedly made its way to the bladder Kevin was better than himself! He was happy. Talkative. And the doctors didn’t see any reason to transfer him to the medical center so we walked out passing another boyfriend chasing an ambulance to meet his girlfriend as they opened the back pulling her out on a stretcher. Our rough night was over but those poor poor doctors and nurses and techs that treat emergency room victims. Their night never ends! We climbed in bed and slept all afternoon.

October 28, 2016

Dental cleaning for Kevin. He had a filling that was falling apart so they wanted to redo it that afternoon but needed his doctor approval. He did fine. And who knew that the dentist needed a liver transplant listed patient’s doctor for approval to fix a filling. It all matters. 

October 24, 2016

With great rejoicing I want to share that Kevin’s bone marrow biopsy/aspiration revealed nothing to worry about! He is currently recovering from a normal common cold. They are watching him very closely but are happy to know he can still be normal. 

Huge relief all around. Continue to pray for his perfect healing as we wait on a liver transplant now with no “known” other problems. (Cytology (?) results are still out there and she will get back with us once they are in.) whatever that means…

We know so many have prayed for this specific test and just wanted to get this out and once again thank you all for your prayers! 

“Rejoice in the Lord alway: and again I say, Rejoice.” Philippians‬ ‭4:4‬ 

Oct 19 Dr. Galati Follow Up

Mental note listen to voice recording*

(Honestly it is Nov 16 and I am just now updating this. I’m going with flatline. I flatlined. Some stuff I have just rolling around in my head and I’m kicking myself for not getting it written. It really helps me to be able to look back. But to write it I have to process it. And sometimes I just let it roll around. So add denial to flatline and you’ve summed me up perfectly this month!) {Caleigh and I went and got nails done recently so with both hands taken my nail lady who knows us pretty well asked how was Kevin. What a test. I had to speak without crying to answer because my hands were tied up. Such. A. Challenge. So I knew I wasn’t ready to write updates if I had such difficulty answering an almost stranger!?!}

This was an afternoon appointment. He asked Kevin the following:

•Are you on a steroid? Yes–5 mg prednisone

•Were you on it before? Yes–at initial diagnosis aug 2011 and tapered off by Dec 2011. And nothing for a while. Budesonide was the next steroid he was on and off until the last hospital stay when the endocrine team said stop. We reviewed that to familiarize him with Kevin’s history of steroid use. 

•How are you feeling on it? Better. More energy

•Any fever. Chills? No

•How about the belly pain? Still there every once in a while 

•He saw his LabCorp from the previous week and said the dosage on Imuran looks good. 

•He asked about Dr. Escudier and the bone marrow biopsy procedure. He asked Kevin how did it feel? “It was ok.” *i don’t know if I’ve mentally recovered and Kevin is like … it was okay… Love Dr. Galati’s comment: I never caused you that much pain.

•It was a biopsy and an aspirate. The aspirate is the part that hurts. {He told us of his intern time in NY with a hematologist and they did bone marrow biopsies all day. So he went into great detail of how it was done and described his first one to us. I already could pass out knowing Kevin went through it but steadied myself as he described the bone marrow being sucked up the needle.} Basically the pain only lasts seconds (like I know) and it feels like a jolt down your leg. 

•He wanted to be updated on Dr. Nguyen and the last procedure [EUS endoscopy w Ultrasound to get that lymph node sampled] he did on Kevin. He wanted to know when we saw Dr. Escudier. We told him she said the lymph node biopsy was just a bunch of blood. Dr. Galati said he would reach out to them both.

•He asked about the career path Kevin wants and if he thought there was a college here that he could live at home and go a couple of days just to keep the wheels turning. Kevin said yes but then I reminded him he doesn’t feel great all the time. Some days are not good. He was just asking for future not expecting him to be enrolled. We don’t want that kind of stress added to Kevin’s day. All that stuff will happen when it happens. Kevin’s timeline isn’t the same as an average 19 year old. 

•He discussed how out of control he feels Kevin’s Autoimmune disease is. The reason he says that is based on the labs, and Kevin’s total protein in his blood is really high. (Sometimes used as a benchmark for how active an Autoimmune disease is in someone) It’s always challenging and he said do we “super duper Immuno suppress him” then he runs the risk of infection. He said it’s very difficult. All sorts of other problems and “phomas.” (If I heard that correctly)

•He said we have to sort of pick your battle: are we going to treat this underlying Autoimmune disease at all cost? (Just throw the atomic bomb at it?) Or do we say you are destined to be transplanted and go that route. [He was thinking out loud] We are keeping his feet in two buckets. Sort of treating the AIH and also on the list for transplant. 

•Based on current labs those thoughts hit him. But for now unfortunately the system was down so he will look at Kevin’s past file later. He could not see the entire file. But was thinking out loud about changing him from azathioprine to one of the other immunosuppressants. (Cellcept,…about 10% of the time they have to switch to other agents) 

•make a note and he’s thinking about it. Nothing immediately. Just remember it’s an option. 

•He said the main thing now is the infection and making sure the bone marrow is behaving. 

•I mentioned that the platelets are low. He said with these Autoimmune diseases sometimes the platelets can clump. And then the machine inappropriately calls them low. He said he could talk to Dr. Escudier and she can totally see them and prove they are being made in his bone marrow and consumed in the spleen. It’s trouble if your body isn’t making them. Also we remembered infectious disease doctors were not worried about them at all. They said the platelets are in the spleen. It’s huge. 

•I asked if they were ruling something out and what. Dr. Galati said it was because of his eosinophils being too high. 

•The bone marrow is the window to your physiologic soul he said.  

•we asked do we still see him in his office and not over at transplant clinic? He prefers to see us in his office for now. He’s in his office 5 days a week while in clinic only Wednesday mornings. 

•we told him the new symptom is blood in the stool. His response was two fold. It could be hemorrhoid or rectal varicies. We did mention that Dr. Nguyen spoke to us that after the EUS varicies were seen in his esophagus. He said someone 50 years old with these symptoms you think hemorrhoid. Diverticulosis. Cancer. Said he was just a little too young to mess with all that. But because Kevin has liver disease and cirrhosis he could have rectal varicies. (He called it another curveball)

•He asked how often. Kevin said everyday last week but nothing this week. So he had Courtney make a note that if it happens again he would want to do a scope. 

•He explained varicies in what I will call a metaphor using Houston traffic! Varicies are the result of blood not flowing properly through the liver. And so the reason his spleen is so big is it’s a plumbing problem. So instead of blood going to the liver it takes a detour and goes to the spleen. 

He asked us how we go home. I said the Hardy toll road and he explained that on that 4 lane road with no traffic we can go 90 mph yet somewhere along the way a truck dumps 10,000 watermelons. Traffic stops. Cops come out or the watermelon patrol (!) they move all the watermelon over so that one lane is open. Cars back up. But we know the area so exit the Hardy toll road and go around the back roads around a development and get back on the Hardy five exits down. That is what the body does with blood. 

•the liver is a choke point because of scarring and the disease it is not allowing blood to flow through. (5-6 lanes down to 2) That’s when it heads to the spleen. From the spleen it’s being shunted to the esophagus and stomach. Ultimately the blood has to go to the heart so the watermelons are the liver and cirrhosis. It’s making sense to me! 

•then he added that the rectal vericies are the exiting the Hardy to the 610 loop and are just going around the other way. All these vessels are connected. 

•the plan is any sign of blood call him. He can “band them” and I asked of course what does that do?! He said it puts a road block on cars going through the neighborhood! We don’t want the cars going through there because those are the varacies. We don’t want that. But I was like well if the old good path isn’t open…??? I don’t even know what I was trying to ask …He completely understood my question. He said you block it off. The blood goes in a “different safer direction.” The problem with the varacies is they can hemorrhage. (This sentence alone is why I’m flatlined for Kevin. Can’t get that thought out of my head. What. That old path isn’t getting any newer or more open. Is it?! And I remember Keith’s dad always had to hop in and get “bands” with his liver disease. It just has brought back a lot of memories.)  

•if he is doing ok come back in 4 weeks. Labs also in 4 weeks. Loved hearing that!

•They have a solution. We know what to look for. And since it’s been a while since this visit actually happened (it’s Nov 17 and I started writing this yesterday) I can add that Kevin has been feeling better. He’s helped at church many times with different things. He’s hopped out on the exercise bike. He’s ordered books from Answers In Genesis to read. He’s had a headache here and there that can slow him down but he’s been doing better. I just finished a Philippians Precept Bible study and seeing joy in suffering and knowing we are to follow Him were perfect reminders that was so uplifting to this flatlined mama. Sometimes my following Him was not looking straight ahead to Him but sometimes passing Him dragging all the things behind me all the way past Him so much so that I am trying to take that lead. Constantly looking back at all Kevin’s been through and trying to follow as my Precept teacher explained so well, when you turn your head to look back you misstep, get all wobbly looking over your shoulder and cannot be following Him. To follow you have to be behind and walking right in the steps they take. Much needed reminder. Praise Him!!! I will trust Him! He will heal Kevin in His perfect timing. He uplifts the flatlined. None of this is even happening to me! I made the mistake of saying out loud “when Kevin hurts I hurt.” So now Cole walks around asking me after hitting or smacking himself or Kevin “Did you feel that? Does that hurt!!” I don’t think Cole reads my updates even though years ago he did one time say when I died he would carry on the blog for me calling me blogger beth, but that brother has been the best brother a brother could ever ask for. I think he knows exactly what it means to hurt when his brother hurts. He’s way better at handling it with laughter!

October 14, 2016 Bone Marrow Biopsy/Aspiration

The Bravest and Strongest Boy I Know!

Kevin did great! While Cole and I were walking back to sit with him after the procedure the nurse said he did better than anyone. Some of their patients have even screamed before they even touch where the needle goes in! So proud of him! I asked him before the procedure to be ready to give me a number for when there is that 10 seconds of pain I wanted to know where on that scale of one to ten it falls. I kept in all my tears until I saw him and he was fine. So tears of relief. But he wouldn’t give me a number. We have a follow Up appointment on the 24th for results. 

October 12, 2016 Right Heart Cath

The dr just came out. He did fine. He’s clear for transplant! Most liver patients have “pulmonary hypertension” … honestly I don’t know what he said. Had to ask Cole. He popped out so fast. I just know we can’t accept a liver unless he had this. So we are a go now:)

Official report findings:

· Right heart filling pressure is normal.

· Pulmonary hypertension is absent.

· Wedge pressure is normal.

· Cardiac output is normal.

· Intracardiac shunt is not detected.

Normal filling pressures.

Normal cardiac output.

October 7, 2016

Kevin is Kevin

Next week Kevin has two procedures. One on Wednesday, a right heart Cath, and then a bone marrow biopsy on Friday. It has taken a while to get the right heart Cath scheduled. The tag line for that one that drove me was “if he gets an offer for a liver he cannot accept it because he hasn’t had a right heart Cath.” I cannot even tell you how much that drove me. And I was patient. I would call. I wouldn’t leave a message I would hang up and try a different number. Marie gave me two and one was direct which that one was always a recording so I always phoned the one she called “general.” She said they are super busy so be patient. And I was. Until it was just past that point of no return. The poor girl that answered the phone yesterday got all my questions when she tried to reroute me. I gave her the history of my calls, told her he is a 19 year old who needs a liver and actually wouldn’t be offered one without this procedure and I somehow cannot ever get a call back. I asked where does our name go. Is there a high turnover in the process and Kevin’s return call never happens because it’s on someone’s desk who left? I told her I just want to know the process behind this. He’s been in and out of the hospital and even during those stays I have said should we get that heart Cath? They have always said just wait and do it outpatient. I’m really curious. Not mean. Just completely curious. I’ve said this too often: I just want to walk around with the white coats to see and hear behind the scenes. It doesn’t help that I’m so literal! 

We had a list of questions to ask Dr. Galati’s office so I called in. I asked them all:

Can he have these two procedures in one week?

He needs a refill of prednisone. 

His standing order for labs expired and we need to be sure the next one has been sent. 

We need to reschedule a follow up since his heart Cath was scheduled on the exact same day. 

She confused me at first because she mentioned he needed to do most of this through the transplant clinic. I’m sure I hyperventilated through the phone because whoever this was I had to mention that we just spent the better part of the summer and early fall trying to get a return call so I was not comfortable calling up the transplant clinic. I know we will start doing that and very soon but if I tried to call now I don’t even know who to ask for. She did agree and say it’s an entire world of its own. And the next available appointment over there was not with Dr. Galati. He rotates between clinics. She put me on hold and returned with good news for us. She said: Kevin is Kevin and he can still be seen here in this office and made us an appointment for next Wednesday. I was so relieved! We will cross over. I know. She called Kevin one of their high risks patients that they like to keep a close eye on. So blessed by that! Really am. I didn’t even need to hyperventilate. 

October 4, 2016 Good News!

Follow Up Day at the Medical Center

Endocrine with Dr. Mejia and her attending Dr. Sharma

He will not need labs for cortisol levels because he’s taking a low dose steroid. It will not be a true result unless he goes off it. They said there is no need for that now. Most likely he will need to follow this same treatment plan with the transplant. So in my mind, not Kevin’s, I was wanting to know his cortisol level. I wanted to see if his adrenals woke up! Kevin looked over at me after I asked the question and no one was in the room and said even he knew that. Well, somehow I missed it:) The low dose prednisone is treating adrenal insufficiency as well as his auto immune symptoms. We don’t need to follow up again. They are fine letting him be seen by Dr. Galati. But reminded him to watch for fever, chills, nausea, and call in with those symptoms. Also, to double the steroid dose if he does get sick because with adrenal insufficiency his body doesn’t know to fight. It needs that kick start from the steroid for now. Once they left the room I remembered the “double the dose” classic question. Two at once or one in an and one in pm. We are going with the am and pm because we remember the dosage in the hospital. They liked the two pills spread apart. But the second one shouldn’t be taken too late. 

Dr. Escudier Hematology/Oncology Follow Up

She had Kevin give quick CBC labs. Then came in and went over several labs that were ordered while he was in the hospital that we didn’t have back before we were discharged in the 17th. Compared to today and those last ones in the hospital his red and white blood counts aren’t bad. His platelets are low. While she was looking on the screen she was just so nice and said pardon me and please give me a minute so she could see what she needed to see to compare and poke around to see each lab. Anyway I just took that time to silently pray that He would give her wisdom and insight quickly as her eyes were taking in the screens. In passing we were catching up on different things. Remembering what all their concerns were. I mentioned that he had his EUS with fine needle aspiration on that lymph node last week. And she clicked around and said the results just were posted. (I checked my patient portal messages on all portal sites even while waiting for her. But I didn’t think they really would be there. Actually it was perfect timing. Because even as I update this and have checked we don’t have results dropped in the portal yet.) So thankful for the follow Up timing. She said it looks good. It is enlarged. Probably from his Autoimmune disorder. But, it is just a mass of blood and tissue but they were able to get some lymphocytes to see and she said that is good. So it’s good to have this news especially waiting for a transplant because it makes every area that had any questions as to “is anything else going on” pretty much answered… well except for this low platelets and elevated eosinophils. She wants to do a bone marrow biopsy next week. She described the process and it’s done in her office and said Kevin is so accommodating … it was a long day! We are tired but have that praising and thankful heart! Kevin seems happier too. Could be his energy level is finally where it should be after it was flatlined so long. Or, that unusually heavy question about the enlarged cardiolrehenic (spelling so off!) lymph node is actually nothing to worry about! But everything to smile about! Dr. Galati got it right last visit. He said for five years no one has ever had trouble with this. But he said we couldn’t ignore it either. Glad we got it done! And are hearts are full of relief and praises for Kevin’s healing in His hands! (I’ve dosed off so many times writing this…too tired but not too tired to rejoice in this good news!) 

October 3, 2016

We went for labs but the standing order had expired. 6 months ago in April this was given and who knew we would be where we are…needing another standing order for weekly labs:0 Since we will be in the medical center tomorrow I will drop by the form the lab we go to wants completed. I think every tech in the lab knows exactly what to draw and they probably know his birthday after repeating it so often. But it will be nice to not have to be on the phone and even nicer to actually drop by the office and not have an appointment! 

Thursday September 29, 2016

Kevin’s EUS procedure is today. I sent this prayer request to our church: “Please be in prayer for an endoscopy with ultrasound procedure (EUS) Kevin is having. They want to get sample pieces of a lymph node that they have been keeping an eye on. We ask that the He would guide hands during the procedure and give great wisdom and discernment to all involved in reading the results and continue to strengthen, settle, and establish Kevin through this entire process.” Pastor Pope was in the waiting room before we were and prayed over Kevin. He gave us an encouragement from the Psalms and explained how many times silver is heated until it’s ready. I love that he expressed that he thinks Kevin has been heated enough because those are my thoughts as well! I will say these last few days Kevin has been on and off with a low grade fever, nausea, and side pain. We called in to the doctor and made sure they knew. We can treat most of this symptoms at home. I also wanted to be sure he could do the procedure today and the assistant said yes because many times the procedure may shed some light on why he’s having some symptoms. So. That’s good to know. 

I sent this text update : He’s out. Me and Cole are back here waiting for him to awaken. Dr. Nguyen came out. He said all went well. He biopsied that area. We’ll see. He said he does have something new. Esophageal varices … he said get w Dr. Galati. They usually “band” those but so far he’s not bleeding from them. It’s from his enlarged liver pressure on the esophagus. (?) And he couldn’t band today even if he wanted to because they did the Ultrasound. (Whatever that means)

Tuesday Sept 20, 2016

Follow Up w Erin Yates w Dr. Galati

On the drive down Kevin asked me so mom, what questions do we have this time. I said what questions do you have!?! He was like, well, I kind of just want to know what happened at the hospital. (!) {exclamation all mine because like if he doesn’t know and it happened to him then oh my we DO need a recap! Lol!} I think one reason it’s been difficult to write this update is how very special the people in that office are to me. Erin walked in. She smiles and calls us her favorite family! She said I know so much has happened and we always have this result and want this test and admit you for this but I want to ask you Kevin how are you? And how are you processing all of this? {As long as I talk labs and tests I’m strong. As soon as that part of my heart is poked even a little –seepy tears flow} And Kevin had that stalwart pose as he straightened himself on the examine table to brace for his answer but with his hand on his leg and his eyes on me I saw in those eyes, yes, great strength, but also truth. He shared that he’s up at night and she asked why and when are you taking the prednisone. And he said just thinking of everything. This part I can’t even type! Goodness. It’s a lot. I’m remembering. It was a good conversation. And it’s precious to me that she related to him on that more personal level. Then she answered his question of what exactly happened during that 9 day hospital stay! She recapped and explained each new thing with great detail. Then she brought in Dr. Galati. For the longest time he walked in and just stared straight at Kevin. Smiling. Shaking his head. Studying. Kevin told me later he thought maybe he had asked him a question and he didn’t hear him! I said no I think he was just taking you in. And happy to see you out of the hospital in a follow up visit! He asked who all are we following up with and when is the EUS procedure. (Endoscopy with Ultrasound) EUS is Sept 29 with Dr. Nguyen (our ERCP doc!) We said we are following up with endocrine and they called us for that before we could get all the way home from the hospital. He took out his phone and said well I’m calling you now to see how today went! Lol! We are following up with hematology. He asked how we liked her. We loved her! Both of those appointments are Oct 4. We told him we had a call into rheumatology but they returned our call and said that they would look over his charts they can see and call us back. I told him they never called back. He said as he looked around the room that he was making an executive decision and did not think at this time we needed to see that specialist. Then Erin explained more later about how many people are looking because of all the different symptoms he has going on and they just don’t feel like he has any of the symptoms required at least not yet and hate to add one more set of appointments. Of course I am all for less and I am all for seeing whomever we need to see that could shed more light on his healing. 

About that concerned lymph node. We asked where even is it! And what to expect. He commented that for 5 years they haven’t had any concerns doing these type of procedures. But they also cannot ignore it. It’s is best to sample the tissue of the enlarged lymph node and keep watching it. About adrenal insufficiency he did agree that Kevin should order some type of medic alert bracelet and explained the significance of that. His body in an emergency if not know by the medical staff could not recover if the proper procedure for such was not followed. 

My notes are not in front of me and I know we had questions questions questions! I had a copy of his last CT scan from the hospital and we had circled lots of things. She explained them away. Medical terminology can set you back a piece. I think we were exhausted from the previous hospital stay. It took me awhile to recover emotionally from this sweet visit. (If you can call doctor visits sweet!) but mostly we needed rest. It’s good to be feeling normal again. Back in somewhat of a routine. 

Hospital Stay 5 — 9/7/15-9/15/16

September 15, 2016

Good news. It’s discharge day! 

8:45 Dr. Escadera hematology/ oncology wants to see Kevin in 2-4 weeks. 

9:15 Endocrine and rheumatology

Follow up with them. They defer to Dr. Galati for which steroid and how to stop budesonide 

10:45 Dr. Seelbach 

Great news all around from him. They are stopping budesonide. Starting 5 mg prednisone. Follow up with all appointments. 

2:20 Dr. Khan 

Dr. Khan just came in. He said Dr. Nguyen needs to still do a scope. They want him to go in and get pieces of the lymph nodes. We can schedule on outpatient basis. He was like why are y’all looking at me like you do not know. Ummm. Cause we don’t! lol! We missed them yesterday. Kev was at CT scan. Also we were leaving 40 mi it’s ago. Transport just never came. Cole has been downstairs waiting. So. I guess it’s good that we are waiting we got to hear Dr. Khan and that information. 

This is to remind me to follow up with that. 

September 14, 2016 

He just awakened w pain of an 8 on lower back side right. They gave morphine at 6:30. He’s still an 8:( new pain. I am going to ask if its adrena glands because they sit on top of kidneys and they are “waking them up” …gave hydrocortisone yesterday… We were and still may go home today. Yesterday was such a good day! So this is unexpected. They came back 45 minutes later and gave tramadol. At least we can ask the doctors since none of them haven’t rounded yet. 

8:10 Dr. Lin

She saw orders for Imuran to be back. It’s been stopped since last Friday. Also when he goes home this time they just want to give the 10 days antibiotic treatment then stop. The daily infection suppression antibiotic isn’t working anymore. We showed her where they moved the IV and she said the best thing is warm compresses. It should be better in a week. It’s a little red and swollen. 

10:40 Phuong Imuran dose is increased by half. So 100 mg. The ID doctor is sending him home when discharged with levoquin. We told her about the extreme pain in his back lower side. She will be stopping back in later. 

12:30 Endocrine spokesman Dr. Q (?) like yesterday stopped in to say he will be stopping by with the team after 4. We did ask him my thought for Kevin’s pain if the hydrocortisone is waking up adrenal glands and causing pain. He smiled and said no. It doesn’t work that way and it’s just staring. But. It was in my head. It’s a new medicine. So…I linked it. 

1:00 Dr. Seelbach he was going to discharge after endocrine team came through today but once he heard about Kevin’s pain he is holding off until morning because he wants a urinalysis and a ct renal scan for possible stones. He also said before realizing that pain that they endocrine team is referring is to an endocrinology/rheumatologist which he’s been wanting us to go see all along. However now there is an actual symptom. He feels sure the adrenal insufficiency is secondary. The ACTH they injected to test it went up while cortisol went down. 

2:45 they took him down for his renal CT scan. No one came by once he returned from this. But mostly the tests may not have been ready since they did them kind of late. Hoping to go home tomorrow after speaking to everyone. So thankful his pain subsides as well! 

September 13, 2016

Dr. Seelbach 8:00 am He mostly wants to see him off pain meds before sending him home. For sure wants him one more day. 

8:30 am Dr. Lin stopped in and said the test of his cortisole were not what they should be. However it’s not her area of expertise so she is sending endocrinologist by and starting him on a hydrocortisone. We have questions for that team later. 

8:45 Dr. Escuediere from oncology did stop by but said the labs were not ready for her to look at. It was kind of early. 

11:30 Phuong stopped in. Checked him. Encouraged him to get up and about to keep from getting cabin fever! Later he showered and me and Cole and Kevin went down to get tea at Starbucks. 

1:30 Dr. Khan and Phuong came in. They want to see him go home tomorrow. They said this place is a cesspool and we don’t want to be around long! They get sick here! I asked about stopping Imuran Friday and should he stop cold turkey or go off slowly. He said ask Galati. That’s his speciality. Anyway. They stopped it Friday because they wanted his numbers WBC to be able to respond. His liver enzymes have stayed about the same so for now it’s not been a problem. 

2:00 Dr. Quervishi (?) stopped in from endocrinology to basically let us know that the tests were run and a team rounds after 3. They may be by as late as 5:30 so if we have questions to get them ready. He explained that Kevin has a low adrenal efficiency … It could be simply a side effect of his budesonide steroid treatment he’s been on low dose for a couple of years. 

5:15 Endocrine Team came in. The main thing they are concerned about is how very dangerously low his levels are. So much so that they want him to have like a medic alert type bracelet because if he had an accident and needed emergency surgery his levels being this low could cause him to not recover from it. Like his blood pressure would bottom out. His adrenal glands are not producing enough. One number was 1 another was 2. Steroid treatment is the answer. She said it could be as long as 6-9 months if the liver team agrees. She admitted to not be so in the know with what he has going on. So what she is asking is to stop budesonide because it basically is being absorbed into his body instead of acting like a cream and coating his liver and stomach like its suppose to do. And the absorption has disrupted his adrenal gland function. I asked what caused them to even ask for this test originally. She said it was basically a fishing expedition and was glad they found this. He has adrenal insufficiency. So. They are going to speak with Dr. Galati. She said he has the final authority. I asked will the steroid they want him to take treat his autoimmune disorders that the budesonide was taking care of. She said she wants him on 10 mg of hydrocortisone in the morning and 5mg in the afternoon. So like 8am and 2/3pm. Just because this mimics what your body’s adrenal gland function does normally. It spikes at those two times. 

*recorded part of this check voice memos

I don’t know their names

Monday September 12, 2016

He’s NPO until after the procedure. No food or drink. It is scheduled for noon. His IV was really bothering him. It has been on and off. So today the nurse looked at it and thought it was swollen so she moved it to his right arm. He said it already feels better. 

Dr. Lin 8:15 am she was glad he’s getting the procedure today. She warned us it may be late. Monday’s things run behind she said at hospitals. All backed up. She said his eosinophil levels haven’t moved much from changing antibiotics but she wants to give it time. Also she is watching the white blood cell count. 

Dr. Escudier oncology was able to stop in. We saw her colleague Dr. Foot on Friday. She said all the scans look the same so nothing changing means she may want to take a look and do a bone marrow biopsy. If not while I’m the hospital then on an outpatient basis. While everything is enlarged as we’ve known: the liver and the spleen. She said the lymph nodes were enlarged as well and that just means they are doing their job. Also having been on Imuran for 5 years could be a reason so all the more necessary to do the bone marrow biopsy especially since he’s on the transplant list. To be sure no other rare disease is happening in his body. All the counts are a little better. The esonophils not so much. She wants to watch them. 

Dr. Lin 10:15 Came in again to explain a test she wants to run. His cortisol labs twice have been low. I think she said hormone inefficiency. They will draw blood. Inject the hormone. Wait 30 minutes and draw it again. Something about the adrenal and pituitary glands sending signals and they are trying to determine which one isn’t releasing properly (?) 

1-insufficient hormones 

2-allergic reaction

3-parasite

4-malignancy  

I finally remembered her list of 4. Just not too sure what they go with. I think it all goes with low WBC and elevated esonophils. 

11:45 transport came right on time to roll Kevin over the river and through the woods to the ERCP! It feels like that. From Methodist across Fannin then trough Scurlock and ink Smith tower. 

He went back at 1:15. He’s out by 1:45. I’m with him waiting for him to come around. Dr. Nguyen just spoke to me. He said it was a stricture in the hepatic duct — so higher up. This time after dilating he also swept for cytology. Said his gallbladder is problematic too but to risky to remove. He said he’s glad he did it and got him early before too much puss. 

September 11, 2016

Dr. Dinakar (1:30p) MRCP did not make them any smarter. Did not see anything that would indicate any other problems. Asked about pain if better, same or worse. Kevin said about the same with pain meds. Called Dr. Nguyn, and he is going to try to schedule ERCP for tomorrow.  

September 10, 2016

All through the night they alternated pain meds. Once he had nausea meds. Between though he did sleep. 

7:22 they are headed to MRCP. He told me I could just wait here because all I would do down there is wait in a waiting room:) so at least he’s early and can eat when he gets back! 

12:30 Dr. Dinakar said he thinks he will need another ERCP. He understands the wait and the caution but would not be surprised if he has another one. He said he is watching him closely and if he has to will contact Dr. Nguyen tomorrow night to set something up Monday morning. He also added another choice for pain medication. He said always have them call! Don’t let him sit in tears. 

2:30 Dr. Fainstein this guy is just funny! He said well I stopped the fever all the rest is their problem! We laughed and laughed. Much needed! He said he would like to see Kevin walk around more. Told him to get up even if it’s to kick me out of my chair! 

September 9, 2016 Friday

Dr. Lin ID 9:00 am 

She wants to change his antibiotic to see if the eosinophil levels go down. If they do it could be he has an allergy to Augmentin. Most have other symptoms like rash or itching. Kevin’s body may be sending that signal another way through elevated eosinophils. She is consulting with Dr. Nguyen. And Dr. Fainstein will be here over the weekend. She explained how the body tries to push out infection to get rid of it. But with his bile ducts blocked it cannot push it out. Also his body doesn’t stop producing bile. It makes bile everyday whether you need it or not. 

He’s had nausea, pain, and lack of sleep. Compared to when we checked in he’s actually feeling worse. Boo. 

Phuong 12:00 Confirmed his MELD is 15. Recommends ro keep Kevin off Imuran a little longer because the enzymes were the same anyway. Will check on ERCP. 

12:45 Came back in after speaking with Dr. Galati. He wants an MRI. And he wants to consult Dr. Escadere a hematologist/oncologist. She said not to worry too much about that “oncology” part but Dr. Galati trusts her. She said remember that spot on the MRI in May that she said not to worry about? I vaguely do. They want to image that. It was a “cardio” something. I will go back and check my notes. Dr. Galati agrees to keep him off Imuran and not to substitute anything. Especially while consulting this next dr. They are going to let Dr. Nguyen know Kevin is in so he is on the radar. They are hesitant to do another ERCP so soon after last one or even again because of its invasive risks. 

The cortisone labs to be done in the morning are for adrenal glad test. 

*from the MRCP in May the area is called 

“Prominent right pericardiophrenic angle lymph node” 

She hopped back in once more to confirm that an ERCP is not going to happen yet. Let’s see what al everything else shows. Letting antibiotics do their work. Ordered an MRI/MRCP Dr. Foot is on for the weekend for the oncology team. 

1:40 Dr. Carbajal said Kevin’s labs are looking better. Could be the iron and B12. He’s adding potassium pill and IV fluids with potassium. He wants to see what the pain pattern is after the IV antibiotics have a chance to work. He added there is something to help him get sleep if we think he needs it. We had him look at the arm with the IV. Kevin noticed it seemed swollen. He said it looked ok. Could be they can slow down the rate of drip. Always have it checked if concerned. Dr. Dinakar is on over the weekend for gain team. 

So the plan for the weekend is control his pain, IV antibiotics changed to levoquin and flagyl tablet, have an MRI/MRCP, consult with hematology/oncology about the pericardiophrenic angle lymp mode and hopefully kee him out of the ERCP:)

5:20 Dr. Foot Great visit… Great explanation of all that he sees they want him to look for. He explained the levels. Why they could be elevated. How stupid the spleen is! Lol! Big spleen can explain the low blood count. Big spleen caused by infection, or antibiotic, or auto immune … All in all he knows they want him to look at everything through different eyes. He mentioned a possible bone marrow biopsy may be needed. May not. The transplant team may want it to confirm he doesn’t have anything going on. But we will wait and see. 

6:00 Dr. Nguyen came by. He doesn’t want to do another ERCP so soon but will if he needs to. He wants him to cool off. Let the antibiotics work. He wants to see the images once they are done. He doesn’t think there is an abscess there. He also told a very encouraging story of a 19 year old boy who had PSC like Kevin who just got his liver three weeks ago! He said he came by to see him to just say hi and he was all white. No more yellow:) He hated to see Kevin in here again. Wanted to know how long the last procedure worked. Asked a lot of questions trying to put it all together. Great guy! We really like him:) He’s been with us from the beginning …

9:30 Probably his worst pain ever. Goodness. Earlier they needed to bring him pain meds at 6 and it was 5:30 when she asked if he wanted to wait until 6 to get the fentanyl or take a tramadol now. He said he’d wait. Who knew. Who knew we would experience our first ever floor coding. The noise blared through the halls. Sirens. It was the room next door. Crazy chaos for an hour plus. So after 7 I peeked outside to see gridlock of hospital staff but it was quiet so kind of shocking to know that many people were out there and no sound inside. The commotion had settled and silenced but the crowd was still present. But. My boy was hurting. So I said quietly I am just looking for his nurse. So I called her. She said she wasn’t in the unit but would get there because I told her Kevin was due pain meds at 6. So he got pain meds at 7. Then at 8:30 the new nurse shift change brought pain meds. By 9:30 he was giving me that look to ask for more. It wasn’t time but they offered Tylenol so he took that. It’s all dumb luck. He manages the pain better if they are rotated every three hours. But the chaos disturbed it. Just like last stay the robbing of the Pixis machine did. I need to learn to bring what we have at home! Great day! He was crying the pain level was that intense. Justin had arrived from Lake Charles so we were able to make small talk and try to take his mind off it. He ended up falling asleep and I just silently prayed that he would sleep it off and let the pain meds sink in. Goodness. Goodness. Goodness. I am just so glad the PCA saw he was sleeping and I whispered to come back later he is in a great deal of pain and needs to sleep. He’s such a silent sufferer anyway and why lately the pain intensifies at night we have no idea. Sometimes it’s just too much. 

September 8, 2016

Kevin felt like showering but after he asked for pain meds. He’s at a 6. 

Dr. Carbajal 10:15 am

•his wbc is trending lower than normal he is starting him on IV iron and B12 (said it helps raise WBC when it’s low he could be susceptible to “freak” infections)

•we asked about Kevin’s HGT and HCT that Tiffany saw was low and he said yes it’s low and for males they usually transfuse below 9. Headaches low energy are a some symptoms of low HGT/HCT. But they want to be careful because of the antibodies in the blood pool (?) he said they like for patients to use their own bone marrow. Something to keep an eye on. 

Dr. Galati 1:45 pm –came in while Sargents were here. He mentioned:

•WBC low and tried to think out loud explaining what could cause this

1-spleen is enlarged holding all the red and white blood cells and platelets 

2-imuran could cause low counts 

3-peculiar that the eosinophil counts are elevated and have been for a while said it could be allergy related. Like to one of the antibiotics but which antibiotic. 

4-he mentioned lymphoma because it can cause low counts but said he has an explanation for all of these. He said with all the scans Kevin’s had recently he should have had some reader notice that. But Dr. Carbajal wanted “specialist” I think he said hematologist so he was more or less wasn’t sounding the alarm but he wanted to control the message. (Kevin says this means so when that person comes in mentioning things we won’t be freaked out hearing it) 

•For now he’s stopping the Imuran. Kevin wants to ask him later if that is keeping his liver enzymes in check what will happen coming off? Good question. 

He’s gonna look at past scans and get back with us. 

he joked after he asked if I had any questions and I said not until I look up lymphoma! He said don’t!!! Stay away from it. But just before he came in his phone died on him and he was googling Imuran and lymphoma. 🙂 So. Galati Googles! Lol!

Dr. Lin 4:30 Infectious Disease

She gave us a good anatomy lesson. Described his spleen and how big it is. It should be tucked under his rib cage. It is huge and way below. She said she thinks because the spleen is sucking up all the red blood and white blood cells that is why it’s enlarged and why she thinks his counts are low. She told us a story of her medical school in China of students from the US teaching them English during a fun Halloween costume lesson one of the girls jumped around and hit her left side on a desk. Two hours later she was sick. They said go to ER. Ended up being a ruptured spleen. She told it to us to make Kevin aware of how careful he needs to be. She thinks Kevin needs a stent. She described how it all should work and how tiny the bile ducts are and that things are not working so the spleen is sucking it in. She said they are thinking on what to do. Augmentin is not working. But mentioned it was a broad one. She almost changed it last time. She said she was locked in a mandatory meeting with the other ID doctors. Not sure if it was over Kevin. 

September 7, 2016

Kevin was admitted to Methodist by direct admit. Which even though it was a huge wait (9:30 arrival 1:00 room available but needs cleaned 1:45 waiting on transport to the room 2:30 in the room!) everyone said once we got on the floor that it could have been worse through the ER. He was still feverish and his pain level was around a 7. Dr. Carbajal was practically in the room before we were. He did his evaluation and exam and started orders and meds and labs. Tiffany and Grant brought us some food and Cole hopped in on his way back from Lake Charles visiting Justin. 

Dr. Fainstein himself came by too. He is the infectious disease doctor we see but so far in the hospital we’ve gotten someone from his team. We have a follow up with him next week for last hospital stay. So he said not to worry he sees him now:) He actually wanted a different antibiotic and said we had a good run of trying to maintain no infection since we saw him first in June. He thinks he will be feeling much better in two or three days. He started him on Meropenem. 

Really great team of people so I shouldn’t complain about the wait. Just seeing Kevin doubled over and sleeping down there makes me crazy. We must have been model “waiters” because they slipped us free parking tickets! Lol! Once up here it was cute to hear the different staff saying to Kevin that they heard he was listed. That means they check on him and are happy when good things happen. At least this mom sees it that way. 

He is away at X-ray (6:30) and ordered a pbj and chocolate milk for dinner. So I told Keith bring me a pbj and we left Kevin’s fan. It’s on the must bring list too! Kevin said he almost awakened me at 2 am to bring him. I said I really wasn’t asleep. So we both need sleep. I talked to my dad last night (liver transplant Jan 18, 2007, coming up on 10 years ago) and I know I started tearing up. He said Kevin is being brave. And I saw things differently hearing that. My dad would know. He had to be around family and friends when he wasn’t feeling well. Bravery sees bravery. He is a strong brave boy. Pastor kind of surprised us with a visit too. Surprise because on a Wednesday voyaging down here is a trip to get back for services and AWANA starts tonight! He prayed Psalm 27 over him. Such strength. We love our Pastor! 

September 6, 2016

Kevin’s doctor won the appeal! He is on the “low MELD in need” transplant list. But bummer he has been feeling awful. We go in tonight if we think he can’t make it until the morning. Praying he can make it in the morning. Much better entry way. Gives me time to do laundry and pack;) he’s fighting another infection in the bile ducts probably. Has had an “almost fever” (99 to 100.2) since last week and a fever fever 100.6+) since yesterday. Goodness. Pray:)

I did sit today and flipped every page of my Bible because I was trying to find a verse I marked. I could see it. Left page. Right column. It was a blessing to see what I had marked over the past two years. I needed the reminder and encouragement as we face probably another hospital stay but more than that another day that Kevin is feeling yucky, tired and feverish. My poor kevy. I can hardly take it and I’m not even the one living it:0 We do serve a mighty God who fights for us and who put us on the path of this doctor who fought for Kevin! Huge praise!!! I hope I can ask how that phone call went! I do so want to know. 

September 1, 2016

Maria called and said they decided not to appeal the exception points. Dr. Galati will appeal the insurance and let us know something Tuesday. After taking this call Kevin texted me 99.6…could be the beginning of something or he could have what seems to be going around. 

August 31, 2016

Maria: Transplant Coordinator Phoned:

•I now have that headache in my right eye that Dr. Galati use to joke he would get when Kevin’s lab numbers came across his desk after speaking to her! Goodness it was a lot to take in!

•as Dr. Galati mentioned yesterday Kevin was denied the 22 exception points for his recurring Cholangitis (she reminded me this is not a standard exception point request. Most are more life threatening: for example, someone with liver cancer who would die before having a high enough meld score…so, the only cure is transplant–they are awarded exception points. Unfortunately for Kevin he isn’t sick enough and has the relief options available even though she agreed it’s a horrible way of life with multiple trips to the hospital as well as procedure after procedure.)

•she will meet with the transplant team Thursday and discuss appealing this. It can be done in writing or on a conference call. If it’s written it takes up to 21 days. If it’s a call they tell them immediately. 

•I misunderstood the points and wait time. I thought once listed, which Kevin is, that every quarter points were added for wait time. Wait time points are only added IF you already have exception points. She kept referring to Kevin’s meld score as his biological one. So his score is his score and it is what the labs say it is. I’ve heard between 7-13. No points. Just his numbers. 

•So first she thinks they will decide to appeal the denied exception points. She did say who knows, Dr. Galati could say forget it. They haven’t awarded exception points for this the last five times or he could try….

•Second, he will appeal the insurance decision denying coverage because of Kevin’s low meld score. Kevin needs to be at a 15 for coverage. They went ahead and listed him because you cannot apply for either exception points or coverage without being listed. She said that’s not a problem. He’s listed. He will not get any offers with such a low score and if they unlist him the hospital will have to pay a fee. So. He’s listed. (Those two little words are the only thing I can truly understand after the entire call! Then I quickly remind myself that with our mighty, all powerful, miraculous healing God we’re good! We are TRUSTING Him and bowing the knee to ask Him believing that He will do exceeding abundantly above all that we could ask or think for Kevin’s liver: “For this cause I bow my knees unto the Father of our Lord Jesus Christ, Of whom the whole family in heaven and earth is named, That he would grant you, according to the riches of his glory, to be strengthened with might by his Spirit in the inner man; That Christ may dwell in your hearts by faith; that ye, being rooted and grounded in love, May be able to comprehend with all saints what is the breadth, and length, and depth, and height; And to know the love of Christ, which passeth knowledge, that ye might be filled with all the fulness of God. Now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us, Unto him be glory in the church by Christ Jesus throughout all ages, world without end. Amen.” Ephesians‬ ‭3:14-21‬

•If both appeals are denied they will keep Kevin listed and he will be on the “Out of Criteria” list. I need to ask if I can audit the class again. We had her on day one of transplant evaluation and it was 7:30 in the morning and she gave us a lot of information but nothing applied to us like it is now. Anyway, the out of criteria list still requires approval from our insurance because they have to agree to cover a transplant from “a not so pristine liver.” She gave the example of a liver that has 35% fat. Anyone with a 30 meld score is very sick and most likely in the hospital and too sick for a liver that fat. The cut off for transplant is 30% fat. However, Kevin’s 19 year old body could handle that percentage of fat just fine. So once on this list he could possibly be offered a liver with his low meld score of 7. Reactions to this has varied. I get it because I think well, Kevin’s lived with a not so pristine liver already. He’s use to that. But Keith was like we don’t want that give that to the sick old people! The 30 meld sick patients are too sick for that liver and it wouldn’t help them. While for Kevin it actually could. It’s all just scenarios to help us understand because I was asking a lot of questions. 

•I asked how many times can we go before the board. I don’t want to wear out our welcome! The longer he has this and the sicker he gets I was thinking maybe we should hold off asking?!? She said no it’s not like that at all:) 

•I said he’s not getting rid of PSC anytime soon so is there an amount of cholongitis infections he needs to have to be awarded the exception points. Like let’s say he’s had 4 recurrences and maybe the board says he needs to have a few more to convince them… Again, she said it’s not like that. This is where she explained the cancer patients and how Kevin wasn’t sick enough. What Kevin has isn’t usually awarded exception points for but they thought it was worth a try because of his age and just how sick he is. 

•I asked how long does one live after transplant. And reminded her my dad is a transplant survivor now past 10 years. He wasn’t even transplanted until 70 years old. She said if he isn’t like most 19 year olds and takes his medicine like clockwork on the dot he will do fine. But if he is like most 19 year olds and starts feeling better with the new liver and he forgets to take his medication then he goes into rejection that would cause a situation for new transplant and then maybe a chance they wouldn’t list you because you didn’t treat the first organ they gave you well enough. But usually because of the young age they get one. We talked about how Kevin has had to have a medicine routine since he was 14 but I was not making any predictions. I can only imagine he will do well on that front. 

•and I did it. I went ahead and went there. I mean, we already have had two no’s so I asked what if these two appeals are both no. What then? I know he’s listed but how do we pay? And can he stay listed? She said she wouldn’t go there yet. She just wouldn’t. And actually this is where she answered my three way catch 22 question. I thought he had to have insurance approval to be listed. And high meld score to get that approval while we don’t have either now. Kevin is low meld score and not covered. And no exception points. But. We serve a MIGHTY God!!! I cannot wait to finish my praise project. The Lord put this on my heart at least two years ago. I was struggling with that part of my prayer life. Praising Him. So I started circling praises in my Bible reading time. Then I challenged myself to find a praise to circle in each chapter. I know He directs our steps in His word and orders our days but am now starting to really see why He led me to circling praises. I am strengthened by each one each day. And in my prayer time or after a phone call like this one I can open my Bible and start flipping pages and can’t help but praise Him!!! My eyes are drawn to the circles of praises and I am strengthened! We will trust in Him… 

August 30, 2016

Dr. Galati follow up from the hospital stay. Well, Dr. Galati may as well have dropped a bomb on us. The “board” did not approve the exception points for Kevin. He is still listed and both of us are waiting to hear from our transplant coordinator. I don’t know why it made me cry it just did. I mean it really never was my plan. None of this is my plan. I realized later today that goodness, God doesn’t need the exception points. We were at Kevin’s labs when it hit me that He can heal Kevin and get him a liver however He wants and we will give Him all the glory. I really need to be excited to watch His hand but I was not in that frame of mind earlier. I see Kevin and know how sick he is and then think he has to be that much sicker(!) I really can hardly take the thought of it. And that’s where I’m wrong. I shouldn’t be heaping on those thoughts before they happen. And I was heaping them on… 

•Kevin had side pain of a 5 and nausea going in

•Dr. Galati wants labs today then will let us know how often when he sees those results 

•he wanted to know what he was doing all day and said it is good when he feels like it to get out of the house “it’s good for your soul” Kevin has been resting and recovering but lately I’d say he’s getting more energy and more mobile. 

•he wants us to follow up with ID of which I told him we have tried. We called them. The office said they would look at Kevin’s records and call us back. I said it sounded like getting an audience with a king! Dr. Galati said go right down there after leaving his office and if we have to wait two hours do it. (So we did. However, no doctors were in clinic but we have an appointment for Sept 13 and asked the nurse to please get our question before one of the doctors answered before then.) 

What Dr. Galati wants to know is should he keep taking antibiotic daily since his bile ducts were opened. I’m thinking the kid was on daily antibiotic, still ran a fever and had Cholangitis with all that so isn’t really helping. I know the other too. Once he’s off antibiotic he’s got Cholangitis and is back in the hospital. It’s why we are listed. It’s why we needed the points. If only they would let mamas before that board! Lol!

•for now he can stop all carafate and use otc product if and when needed for heartburn

•he said the “dyspepsia–deranged or impaired digestion; indigestion”… Kevin’s dyspepsia was caused by blocked bile ducts. The ten cent word of the day. Dyspepsia. I waited to look it up after leaving the appointment. It sound like some kind of seepage or leakage. Glad it’s just deranged digestion! So now I can call Kevin deranged! Poor kid. What isn’t in that definition is the extreme pain that accompanied that. 

•he encouraged again small meals. 6 grapes instead of non nutritional salad. He’s not against salad but for now Kevin needs nutrition in small amounts. Energy and protein. Eggs. Almond butter. Smoothie. Grilled chicken dipped in ranch nibbled on throughout the day. He said all of that because Kevin said his appetite isn’t what it was. But he weighed 168 so that made me happy. 

•We have a follow up with him in 4 weeks 

•I have a call into the transplant coordinator. I want to know how many points we get for waiting on the list. How often they are given and if we are really still listed. I feel like insurance didn’t approve because he was too low of a meld score so they needed exception points and now that we don’t have those how can we be listed cause he is too low so we don’t have insurance approval. I call it a three way catch 22. Or maybe it’s a straight up catch 22 and it feels like a three way one! What do I know!!! 

We texted to see if Tiffany was working and she was! So we navigated our way to that hospital and floor. She was able to take a quick break and walk us around. It was so exciting to see her at work! 

Hospital Stay 4 — 8/11/16-8/17/16

August 17, 2016

12:15 Phuong stopped in to see Kevin and check to see if he was fine going home. If he felt better. We asked about counts if he needs to wear a mask: she said no for now but be careful around people. She explained when to follow up and where. Once he’s listed he is seen by Galati in the transplant clinic (we spent two days there during his evaluation) and we use their office as a back up if we can’t get in. She wants a follow up next week. We will be sent home with Augmentin twice a day for ten days then daily. Dr. Seelbach popped in again to ask if we had enough at home. And to tell us to follow up with Dr. Feinstein in a week or make an appointment. Phuong did say their PSC patients experience this same pain and unfortunately it’s a cycle his bile ducts are in because of the disease.

Noon: Maria the transplant coordinator called. He is listed. They mailed the letter for exception points. They have 21 days to get back with them. If it’s approved they will contact insurance. If the points are declined then she said Dr. Galati will conference call with the board. For now he is listed. It’s a low meld score for transplant here so we wont have any offers but he’s listed:) I think he has a MELD of 22 ( w exception points of recurring Cholangitis)…offers start coming around 30…

11:00 Dr. Seelbach walked in and said he gets to go home today!!! He said now we know. He just couldn’t believe it but that blocked bile duct caused so much pain! 

Sometimes the discharge takes a while…

August 16, 2016

Last night he had pain at a 7. After the pain meds it went to about a 4 but right back up to 7. He had diarrhea so we need to ask about if it’s Cholangitis related or c diff related. He wasn’t allowed to eat or drink after midnight but didn’t feel like eating or drinking the smoothie Tiffany and Grant brought him. Cole brought a Redbox distraction:)

6:30 am They came and took him for his ERCP. 

7:50 am I am in a waiting room now as they took him back. 

8:45 am Dr. Nguyen said he was glad we did the procedure. He did have a stricture. Once opened w dilation pus came out:( he only dilated the bile duct. Didn’t need a stent. He said he remembers he didn’t do well with a stent but needed to do that for the first procedure. Kevin is still sleeping in recovery. 

He also mentioned that contrast was injected into the gall bladder and came back out or something like that so he feels that it’s working ok. We asked him bedside if it could be the gall bladder …

10:45 Dr. Seelbach was glad when he stopped by that “we figured it out!” Cholangitis. He said that or even the antibiotics to treat that can cause the diarrhea. So since they didn’t do the X-ray yesterday he said no need to today. He told Kevin best case he goes home tomorrow. Worst case one more day after that. And to get some rest:)

11:30 Phuong just left. She was in for a while. We talked while Kevin was asleep. Then she checked Kevin. Such a difference today because they have an answer. She just hates that he’s going through this. Says normally his Bili level is a sign for Cholangitis. So this time it wasn’t so much because it was below 3 coming in. They are doing their best to get him a liver:) I asked about all kinds of things I remembered. Like there isn’t a GGT number in the standing orders. She said there’s no need since it’s already elevated. Now they mostly want the numbers for the meld score. His liver enzymes are elevated from AIH and he is on the strongest medicine for that and any higher can really throw him into unnecessary infections. She said Dr. Galati is working on a letter. She is going to speak with Maria from transplant. We spoke with her yesterday. She told Kevin she doesn’t want him to lose anymore weight. And to eat small things all day. She said be careful out and about because of low counts. But she wants him on the move more. After she examined him he just went back to sleep. 

6:00pm I stepped out to get something to drink and ID came! Kevin got to speak to her and once I got back I found her in the hall. She was glad to know the ERCP helped. She mentioned something about in medical school they drilled that “mitochondria” something was a marker for PSC and Kevin is negative. She said when she saw his age and what he had she knew it was rare. She said we have to be careful of the GI tract. It’s all about that but he has to eat! And to be sure to keep Dr. Galati up to date on how he’s feeling. (Boy do we! If she only knew!) She has an accent so I try. But she has a great smile and genuine care on her face when she updates me. I love this place. She wants to watch him overnight. Could go home as early as tomorrow. Cole came up and after watching a red box Kevin felt like walking around! First time since he was admitted last Thursday! Praising the Lord for that!

August 15, 2016

Tiffany brought me food last night! She can park free at certain times:) Right before she was going to leave Kevin asked for pain meds he was at a 7. He got them. They actually didn’t touch the pain. So a little later he called for some. The nurse had to call Dr. Seelbach and he approved another dose. So am hoping for answers for today. That pain was on the liver side. 

His weight is up to 166. He was around 160 when we came in Thursday. Such a praise for me!

Here are the daily doctor visits:

9:35 am Dr. Khan and Phuong from Galati’s practice said his white count is better and Bili is down to 2.2. Pain is possible PSC definitely can cause that. They want Dr. Nguyen (ERCP doc) to stop in today. So they felt no CT scan for now. Wait and see what Dr. Nguyen wants. 

Somehow they were in and out and I realized all we didn’t ask… Like what page are we on. Is he c diff and neutropenic. Do we still have to be isolated. Can we walk around. I really think Kevin needs out of this room. To help in many ways. But forgot to ask all of that! 

11:00 am Dr. Nguyen he said he thinks the bile ducts are scarred so he wants to do an ERCP at 8 in the morning as long as his white blood count is good (nothing after midnight. Eat light last meal). He wants to dilate the bile duct and look and see what is going on. He said recurring Cholangitis can block things. He said they cannot transplant with an acute infection. (I actually started crying because I misunderstood him. I thought we are hopeless because Kevin keeps having recurring infections so how is he ever gonna get a liver!) He apologized for not being more specific. He meant the infection has to be cleared up. And that happens every time he gets IV antibiotics. He said it’s actually more points to raise your score each reoccurrence. I asked him about all of that c diff and neutrophils and he said the c diff is colonized. The conversation about the neutrophils I got when he was saying the explanation but could never repeat effectively. I told Kevin after he left that I need a refresher on how things work inside. So I should google that! 

12:00 Dr. Seelbach wants an old school x ray to see what is causing pain in the belly. Kevin said his uncle calls that “bubble guts!” He said good news that he can come off the neutropenic status and all that stuff can come off the door! I did relate to him about what the ID doctor said how his spleen is storing up white blood cells and that he isn’t a true neutropenic. He started a conversation I cannot even follow about how interesting that was and something about platelets and digested:) 

Caleigh asked a while back if we were going anywhere before school started. I was like well, we got through the wedding and at the time all things liver transplant evaluation and I said let’s see. I looked at several options. Finally last Sunday I thought even if Kevin wanted to stay back with nurse Tiffany and bro in law Grant the rest of us could go. So we booked San Antonio then a beach stay at Corpus. Less than 12 hours later we started this week in the ER. So for now. We cancelled San Antonio. But kept the beach place. As it stands it will be daddy daughter get away. I told Caleigh she can check out the place and see if we ever would want to return. I haven’t been to corpus since Keith worked there a summer before we were married! 

1:00 Maria the transplant coordinator called and touched base. She said since he is in house she will go ahead and order that ABO that was needed to be listed. She said our insurance declined approval because of his low meld score. I said so the peer to peer didn’t work. I said I wish I could go peer to peer with them! She agreed! But they are moving forward. They will list him after the ABO results and will apply for the exception but she said it is not a standard exception that they normally approve right off. So we need prayer for the board to approve those points! I cannot imagine how sick people are that are on the list without points. Kevin’s life the past three weeks has not been good. I misunderstood again a previous conversation. The exception points he gets is based on recurring Cholangitis. Not how many times he has it recur. Kevin thought she looked familiar. And this time I remembered to ask. And sure enough she had a daughter in Kevin’s class. Use to live in Gleannloch so both of her kids did the same schools as Kevin. Small world:) She will call back once he is listed and when the exception points are added. Then the insurance will approve. It takes about 21 days to hear from the board who decides the exception points. 

August 14, 2016

Keith stayed last night. Me and the kids came up after church. We actually all were here for Dr. Seelbach’s rounds. He started him on IV protonics just to give his stomach a break from pills. He asked how that was going. Kevin said much better. He said c diff is up in the air. It’s not pathologic. He said to ask Dr. Lin (ID) about all that. He will discuss with the team in the morning but he may want an image of his liver. So a CT scan may happen tomorrow. Kevin is still having some pain in the liver area. He pressed and pressed on it. We were all laughing after he left when Cole reenacted that scene. Pressing on his liver with his fist and entire body asking does this hurt! Lol!

I am staying tonight and headed down for soup when Kevin showered and as soon as I got it he texted me that the ID lady was just in. Asked him if he had pain. He said no and asked if he had diarrhea. He said no. So I missed her. Inconceivable!!! But he said he pulled his phone out but she was talking so he didn’t want to do anything. So. I headed down to the desk and asked if she was still on the floor. The nurses station said she was and I could catch her coming out of a room soon. I was like I don’t want to just accost her in the hall. And they smiled at me and said Go For It! I mean we’ve only been here since Thursday and all we do is wait to see a doctor or hear results. So I saw her in the hall and I did get to have a great conversation with her! (I told her Kevin was suppose to call me. She said she saw he pulled out his phone but didn’t use it and that he listened to her talk and she appreciated that!––she said she was seeing a patient then was going to hop back down but who knew.) Dr. Lin touched on these things with me:

•she doesn’t believe he has c diff 

•she said he is a carrier for it

•some test they do (toxin) not sure here 

•neutropenic status she doesn’t believe he is true neutropenic. Yes the count is low but she said his spleen is enlarged and he’s storing them up to fight!

•she thinks it’s severe Cholangitis and her main thing to think about is get him feeling better and what antibiotic to send him home with. So she said she wants to see him here at least one more day and will think about what he goes home on. 

•she did say now we will know what to do if he ever has diarrhea 

(She mentioned something like once the sample is given for c diff if the lab hears no diarrhea they usually throw it out and don’t even check…)

We have the best nurses! We just finished having such a good conversation with one. Leah. I told her I was able to catch the doctor I missed and told her all that she said. She smiled and said tomorrow the entire team will be in and hopefully they will all get on the same page. I think I get that. (Attending dr ordered neutropenic status and ID dr saw c diff. Not sure exactly which page who was on but each has their own speciality…) She told the best story of Kevin. Was so complimentary of him. She said when he first came to the floor (March) all the floor was talking about the young cute single patient:) And how calm and nice he is. And how aggressive all the doctors have been with him. She explained all about the liver transplant and how he will be here before the transplant and then move to ICU and then to Dunn Tower 4 or 10… She said they always tell their patients we want to see you go even though they love having him because that means he will get better and hopefully they will see him in the park or the grocery store. All of this happening and finally getting some resolution and seeing Kevin feeling somewhat better I can say as Pastor prayed over him in the waiting room of his endoscopy last Tuesday that all of heaven is fighting for Kevin and I heard the verse again today in his message: “They fought from heaven; the stars in their courses fought against Sisera.” Judges‬ ‭5:20‬ It is so easy to get discouraged and overwhelmed and I have been in and out of that seeing Kevin hurt. It hurts to see your son hurting. But I realized every time I asked God why or is this enough yet can this be enough and what do we do about the white blood count He comforts me. I realize He created us out of dirt. He made our bodies so fearfully and wonderfully. When I start to fall apart over any of the results I know He knows. He knows what we don’t know. Pastor said that in today’s message. He can see in the dark. I have to trust Him and be strengthened and not overwhelmed. He knows what Kevin is going through and Kevin’s healing is in His hands. Cole and I had the sweetest time in prayer last night. At the hospital we hardly have any chairs to sit on. We were home. On the carpet in my room. I was like chairs everywhere and we were sitting in the floor. Before he went to bed we just kneeled over the ottoman and cried out in prayer for His healing for Kevin. 

August 13, 2016

5:30 I called in his food and the lady who answered said he was on a “neutropenic diet.” I said a what? She put me on hold. Anyway. She later told me he needed all his food cooked. Because of risk of infection. Then less than 15 minutes later the nurse came in with a mask on. All day it’s been gloves only. She said he was neutropenic. And pointed to the door and sign placed on it to mask up. So Keith passed all of us out a mask. Except Kevin. We are here for him. And apparently want to protect his weakened state from us. That’s how quickly things change. I really have been researching today so I get to get on the Methodist patient portal and learn some more. At some point today Kevin came out of the bathroom after looking in the mirror and said: I’m yellow! I keep checking the inbox. They send all test results to the portal. 

3:00 first dose of vancomycin was given. It was in a syringe and Kevin took it orally. 

12:15 pm Dr. Seelbach 

He actually said they were questioning the c diff result but would most likely treat him for it. He said the ID doctor would be around again. I’ve waited to update because of this but when I asked the nurse if she was coming she smiled and said that he was the only doctor left on the floor and it would probably be tomorrow. I told her I was very literal. 

11:15 am ID team Dr. Lin

She came in and explained how one gets c diff and what you do with it. Also how different antibiotics work. His stomach should be a sterile ground but because of the condition of his liver she said “germs are just waiting to get in”… And hat it is such a fine balance keeping the gut in check. Especially on a daily antibiotic. She encouraged once out of the hips oral to take the daily antibiotic with yogurt. I told her he takes a probiotic twice a day. He is fighting two things possibly. The c diff (Clostridium difficile) and Cholangitis (bile duct infection). I asked how it’s treated and how long. She said a different antibiotic called vancomycin. And they would stop his IV antibiotic he’s been taking since he was admitted. She asked about the different symptoms Kevin’s having. He is only having pain and taking antibiotics. 

6:20-8:40 am  A Series of Unfortunate Events

Kevin was at his pain limit after 6 am during regular medication visit by his nurse. He asked for pain meds. Then…hours later and several trips on my part in the hall and to the desk we found out that the two rooms on his floor containing the Pyxis machine (dispenses drugs) was robbed…. So they had to shut it down. So unfortunately for Kevin he had to go so long before relief. It’s all I can do not to have a fit on the floor. I’m glad I didn’t. But really watching your kid hurt and asking over and over and over for pain meds. Who knew. At my breaking point I did finally ask at the desk what is on the radar for room 769. You tell me what you have that he needs. Because I think we got lost in shift change. I stood in the doorway forever trying to see a nurse or monitor what could possibly be taking so long. I said he asked for pain meds at 6:20. She explained something happened and the machine was broken into. I said couldn’t they get it from another floor. But at least I knew a little. I walked in the room and wrote 8:36 on the board and was going to head back out in 10 minutes. 

Than the second unfortunate thing happened. The new nurse for this shift whom we’ve never had walked in with his pain medication and said his stool sample tested positive for c. diff … I’ve been reading up on it but am waiting for the doctor to come in. Maybe this is the reason behind all those weeks of intense pain! But as a friend sent me earlier: once again Kevin doesn’t fit the profile. The only symptoms he has in common with the info I’ve seen is he’s in pain and on antibiotics. He has NONE of the other symptoms … Which may explain why it took so long for them to ask for a stool sample. They were actually looking for h pylori we thought. Who knows. Definitely relieved to know something. Kevin has said every hospital visit that he is older than Keith and I health wise… I believe it! Poor kid!

*Mona who knows us and remembers him from day one is the charge nurse today. She came in and told me the entire story in more details about the theft. I did tell her that the bad guys know when the nurses are distracted because it only takes one hospital stay or a casual observer to see the routine of the floor. Everyone knows shift change and bedside report and there is even a note posted on the door of the nurses room when to not disturb them. To me that is perfect information for a bad guy. But no matter how secure if they want it bad enough they will get in. And he did. Hopefully when she visits again I will get the rest of the story! It’s all on film so another reason it took so long was they were playing back film and trying to warm all the other floors about what he was wearing… Crazy morning!

August 12, 2016

All around going into another night and ready for bed this night is much better than last night. His pain level isn’t gone but so far has finally been managed. Several things helped this: IV bug juice (he’s on Zosyn); tramadol and fentanyl for pain as needed even though they really barely take the edge off; and several days now on carafate. So the “heartburn” GIRD is lowered to between pain level 3-6 but the liver side pain is increasing as is his bilirubin. I get the test results in his my chart so can read them as best I can once they submit them. That’s the only reason I know his Bili went from 2.8 to 3.2 to 3.4 and this is on antibiotic. I’m definitely ready for that to decrease. But the first doctor did mention “sludge”… Ready for a good night’s sleep:) I did say I wasn’t leaving his side until I saw all the doctors. It took all day. Tiffany walked over after her shift ended after 7pm and I mentioned to her that the only doctor we haven’t seen yet is ID and she walked in the door! 

8:00 PM Dr. Weinert 

She stepped in for ID team. She packed a punch! Leave it to her to just really feel for Kevin and know exactly what he was going through. She’s the bug juice doctor! She seemed to relate so well to what his symptoms have been. She looked at his scope results I had in the binder from Tuesday. She can’t wait to see biopsy results from that. Explained some of the results: esophagitis in lower third of esophagus; a few small polyps; moderate inflammation; friability (she said wet like-paper not strong) and extra acid was found. (That part needs no explanation!)

She was easy to ask questions to and we really showed her where Kevin was hurting. 

She referenced H.Pylori and Yeast describing what they look and feel like. Treatment. But no news yet since the biopsy results still are not back from Tuesday’s scope by Dr. Galati. 

She said he was definitely cooking up something??? 

1:40 pm Dr. Carbajal

They are still growing cultures.

Sludge was in the gallbladder 

No infection in the wall of gallbladder 

Moderate inflammation 

Added back azathioprine and Ursodiol 

Changed the karafate tablet to suspension at Kevin’s request. The pill really hurt after taking. (Or that evening set hurt)

9:00am Phuong (Dr. Galati’s NP) was in. She took it all in. Asked questions. Just touched bases with us and will get back in touch once she has contacted Dr. Galati and Dr. Carbajal (hospital attending physician) She also will try to touch bases with Dr. Feinstein his infectious disease doctor. (ID) She said it looks like we may be here until Monday but didn’t know for sure. All I know is I don’t want to take him home until we know why he’s having such pain. 

August 11, 2016

10:00 pm — But the pain he is experiencing mixed with heartburn and the heartburn has to have another name because there is absolutely no relief. It’s just been rough. I almost think there has to be something else going on. It seems like maybe appendix or gallbladder. And I voiced that. If they say they will check back in an hour and the pain isn’t better in 45 minutes I am on them because he’s is hurting and I think they need to know. (And I’m like well what’s 15 more minutes!) They have been wonderful and when they walk out I have tears just streaming because I know they know. It’s hard to remember their exact words but they are trying to encourage Kevin and tell them they are here and if they cannot help they will get someone who can. 

4:00 he had an X-ray so we went searching for food. We missed seeing Dr. Carbajal too. We walked in and the nurse said you just missed him but Kevin will fill you in. I was like yeah right. Here’s what I was expecting from him in a classic Kevin way: it happened. The dr wanted him to skip his immune suppression medication. I’m not leaving the floor today that’s for sure. I will be on a nurses station coffee fast!

11:00 direct admit to Methodist 

“When you are direct admitted and they lead you directly to the waiting room… For hours and hours… Midget is getting spot on cubing lessons!” I snap chatted a picture of Cole giving Caleigh rubix cube lessons with that caption. I’m jealous that she actually is getting it! I have no concept or desire to! That’s how they spent their time waiting but Kevin was miserable. Doubled over. He kept asking me to please go see when the room was ready. So I kept asking. They said they discharge at 11 and 5 so we probably wouldn’t get a room now for hours. Very disheartening. 

We waited for hours and got on the 5th floor after 2 and moved to the 7th floor before 10. So it could have been worse time wise but it was pretty bad. Before going up they brought him a pain pill. Then once up on the 7th floor and after we met the new nurse we were able to get an IV pain and nausea IV medicines. After an hour it wasn’t helping at all so we called in the nurse who called in an np. At one point between the pain meds he was to the point of tears. I prayed over him and we were both needing a tissue when a tech came in to put a telemetry on Kevin to monitor his heart. Just routine hospital thing he’s worn one before. Kevin was in the chair and I was standing over him. No one in the bed. So the tech was like whose the patient:) I’d give anything to be! I’d trade places with him in a heartbeat.

9:30 am 

We got the call back that Dr. Galati wants to direct admit Kevin to the hospital for IV antibiotics. Again I am relieved because now he will get more help than Keith and I can muster up.

8:30 am

Called Araceli at Dr. G. She’s the medical assistant that hugs me when we are in the office:) She is getting a message to Dr. G and will get back to us….very thankful I got her and not a voicemail! We have plans. I just don’t know which plan to implement. One contradicts the other. But once fever enters the picture most everything changes. 

7:00 am

Ok. So yesterday wasn’t as good as I thought:( he made it in his bed all night and I was so happy about that. It was great not finding him in any of his spots downstairs. But that was all the success we got. He said he stayed in his bed and just dealt with the pain. The rest of Wednesday he was miserable. Barely ate. I got in from church. He was in tears from the pain. I can hardly take it. He slept in the chair in our room last night. He awakened at 5:30 with 101.5 fever. Will call Galati when they open. He asked for oatmeal and toast so that’s good:) 

August 9, 2016

Hurting Out Loud

This is how I am describing Kevin especially these past few days. He has been hurting out loud. Doubled over. So we had to search for answers.

Today’s scope by Dr. Galati revealed:

•no flagrant abnormality 

•he discussed at great length our options:

     >The daily antibiotic he takes could be causing it. First he sent a message to his ID doctor and will get his thoughts on if he agrees with him or not. He doesn’t like the time of day Kevin takes it. So we will move it to am with food. Easy enough. We will touch base with him Friday at 10. He wants to know if it helped. 

     >Protonix: He increased it last week to twice a day and now wants him to drop back down to one a day in the morning. Especially since it wasn’t helping. 

     >Another option is treat bile reflux. So far none of the acid reflux meds and otc and prescription meds have worked so it could be because it’s bile reflux. Which is not acid but alkaline. He said there is a fair amount of bile in the small intestine as usual but with his liver patients sometimes the liquid karafate for bile reflux helps. 

     >Kevin’s esophagus might have a motility issue. This is the last option to go to. Dr. Galati noticed that his esophagus wasn’t contracting at a normal rate and it could be because he was under sedation or it could be part of the problem for his reflux because it’s not pushing the food through to the stomach. He said there are tests for this and meds as well but before going down this avenue we will cross off the others. 

He really spent a lot of time discussing Kevin’s situation with us and showing us his concerns about Kevin’s stomach. He went and looked up the last scope to compare this one too and in all his liver patients he sees some polyps develop on the lining. Kevin’s aren’t unusual enough to be causing what he’s feeling. Some patients have huge polyps and complain about nothing and some show barely anything and show symptoms. It’s not so much of a one to one correlation. 

He said he knew we were wanting an “ah ha” moment but for now he thinks implement one at a time. I told him this was an “ah ha” moment for me! I said if we saw Dr. Feinstein at 3 and he gave him the long term daily antibiotic then I took the script straight to cvs and started it whatever time of day it ended up being:) I’m as literal as the day is long. So we kept it at that time because it’s taken once a day. So in my mind once it’s started then. You stick to it! 

So we have plans for an answer and I’m calling that an answer to prayer!!! And for now it hasn’t taken away all of Kevin’s reflux and discomfort but it has surely brought great peace and hope for relief. 

August 8, 2016

I took kev to ER early this morning. He was doubled over in pain and they gave him a GI cocktail and sent him home. Even though I kept asking has anyone contacted Galati! They just looked at him and said there’s nothing we can do. Sent us home w a script. I said I’m not filling this until Galati approves it. So I called once his office opened and we had a 3 appt. My head hurts from crying and lack of sleep. Kevin just looked and felt so bad.  Galati is scoping him first thing in the morning. He wants to look. Says it’s either flagrantly abnormal or flagrantly normal but just needs to see. Been a long hard day. Love that dr!!! He rearranged his entire schedule after seeing Kevin today. Even put us on the schedule to be seen today. Love his staff!

August 4, 2016

4:00 PM

We Heard From the Transplant Committee 

Marie called from the transplant committee and said Methodist has accepted Kevin for transplant! That is an answer to prayer!!! However, the team wants him to have a right heart Cath to measure his pressures due to steroids he’s been taking. She said the transplant process is “hemodynamic” and there is a lot of stress on the heart and lungs when he is on the transplant table they want to be sure he can take it. (When they have to stop the flow of blood to make the transplant when it starts again the pressure could be stressful)This needs to be completed within three months. Cardio should be calling in two weeks. He also needs another set of ABO’s which is blood group labs. It’s an abundance of caution but he tests as an O+ blood type. But he needs to have another set stating that. 

Currently Kevin’s MELD score is 11 and our insurance will not approve transplants at a score below 15. (At evaluation his MELD was 15. It changes every lab draw) She said it shouldn’t be a problem once they explain peer to peer and once the committee approves “exception points” for Kevin’s recurring Cholangitis which is the reason he needs a new liver. My reply was, well, we could stop taking some pills over here and his MELD score would jump to a 30 which is what they transplant at. She explained that by a year or a year and a half Kevin, with exception points, will be there. Once the points are given Kevin will have a MELD of 22. That increases every three months because points are given for wait time. This is why in a year she said we would be receiving “offers”… So for now she will call again in a couple of weeks after the insurance is settled. Then she will inform us that he is “listed.” 

I know that what she says and what He knows are two different things. I was reminded today in my complete numbness of the day (wondering if he was being presented and waiting to hear the news and seeing him in absolute misery every morning for weeks) that we are to be strong and of a good courage! Joshua 1:9 and I told my Rebekah the very verse she sent to encourage me was my verse when I was expecting Kevin, and it’s what I am being encouraged with on a discouraging Kevin day. He knows and His time is perfect!!! 

11:00 am

We saw Dr. Pope earlier today because he is still Kevin’s pediatrician/pcp until he’s 21, and we could get in quickly and closely. Kevin was on the couch again this morning sitting up awake and in pain. Intense heartburn. Dr. Pope called Kevin Skelotor because he said he is a skeleton of his old self but said he looked good and his BMI was great! Unfortunately he didn’t love how he got there. He explained all things heartburn and the different levels of medicine as first, second, and third generation treatments. Kevin is on a double dose of the third generation medication so he said it was worth checking if H. pylori may be at play. We fielded a lot of questions and have some follow up things to take care of. Make sure he can see and has access to Kevin’s records and check on the scope. 

August 3, 2016

People Ask How Is Kevin

Here is what I don’t say. I find him every morning on the couch. (The past 3 weeks) He’s in pain from intense heartburn. He isn’t getting sleep at night because it hurts. We have done and are on everything he can possibly be on for it. His doctor knows and is going back and forth with us. He is miserable. I am helpless. He said all day it really never goes away it just gets less intense. 

Tomorrow is the day or it’s the earliest of the days that his case will be presented to the transplant team. Dr. Galati was out all last week and wanted to be there to present Kevin. They meet every week I think on Thursdays. 

August 2, 2016

We called in to Dr. Galati for heartburn questions. He wants him to double the protonics. One in the morning and one in the evening. After the last visit he said wait a few days and start taking fluconizole again to see if that helps. Kevin said it felt like when he had that yeast infection. He’s almost done with that and there has been no difference. 

July 18 & 20 2016

“Helicopter Doctor”

Transplant Evaluation

Monday:

This was the first day of evaluation. It was also Tiffany’s first day of work at Texas Children’s in the medical center as well! So we took her with us and picked her up after. Our day was an ALL day one. Perfect timing! 

We started the morning with a liver transplant education class. It was a lot of information. It was a lot of the risks. It was an overview and some information we knew. Some we didn’t. And they sent a packet home to read. Dr. Galati and his staff have already introduced us to most of the information starting a year ago and NOW I know why. 

In the transplant clinic the entire rest of that day we spoke with a nurse practitioner, a surgeon (btw he worked with Dr. Vera in Memphis years ago where my dad received his liver transplant), cardiologist, dietician, social worker, financial advisor, and he had labs done as well as a pulmonary function study. 

We all slept and rested all day Tuesday in recovery! We did have to address paper work including a care plan for 30 days after transplant once he gets on the list. We filled out medical power of attorney and an advance directive. I was tired and one of those made me a little upset. I “go there” when the question’s are “I desire to die as gently as possible or keep me alive in this terminal condition.” Goodness. It’s just not what you want to walk around thinking about. Especially an empathizer like myself. But it is the WISE thing to have. So once we have those notarized our homework is complete for the social worker! Kevin had to talk the most with that guy! He didn’t just ask yes or no questions but wanted to know how he was coping and who was in his support group.

Wednesday:

Final day of transplant evaluation he had the following:

Carotid Duplex Scan, Echocardiogram, Panorex X-Ray, Chest X-Ray, and a Dexa Bone Density procedure. 

3:30 Dr. Galati follow up for a one month visit just happened to be on the end of transplant evaluation. Which worked for us because he’s just next door from the outpatient center. The number one thing bothering Kevin at this time is heartburn. That sounds so trivial for what he looks like when he has it. It’s awful. Painful. And could be another episode of a yeast infection from his “infection suppression” daily antibiotic. Dr. Galati liked that phrase! (Maybe even coined it) We asked about a time line for transplant. Like we know he cannot know but I was like 6 years? He said no not that long but maybe not next month or next year! It could all change in a moment based on Kevin’s symptoms. Which we get. We mentioned what will everyday life look like for him. College wise. He said not to be a “Helicopter Doctor” but he wants him to stay around here. (And I feel sure he coined that term and I love it!) Maybe take some online classes which Kevin is not a fan of. So. Maybe he gets a gap year or two … It’s not pressing as Kevin would say. 

I should mention the entire medical center complex is an excellent place to catch Pokemon! 

July 14, 2016

Kaylon has been blitzing our patient portal and email with scheduling appointments for the transplant evaluation next week. Kevin will have very full and very long days down at the medical center next Monday and Wednesday. I’m gearing up to take it on, and I’m not gonna lie… just peeking at the schedule and emails is a bit overwhelming! But I am so thankful that it is finally happening and that she is completely handling it all. We just have to show up and follow the directions! And that’s really a Kevin “we.” I am praying that the spirit of the Lord will rest upon Kevin and the transplant team and that He will give them wisdom and understanding and wise counsel and be surrounded by His knowledge and love and might! From Isaiah‬ ‭11:2‬ 

July 12, 2016

Patient portal: Erin replied earlier to my replies yesterday that she is glad Kevin is having a little fun and if he’s feeling fine she isn’t worried about the slight change in blood work. 

July 11, 2016

Today Kevin and Caleigh left for teen camp in Arkansas with our church. Kevin as a counselor and Caleigh as a camper. They are at Triple S in Rosebud, Arkansas. I am praying for every teen and counselor! And am trusting Him to keep Kevin strong. He left at 6:30 am. I had him get labs Friday because today would be the two week lab day. By 8:00 am I heard in the portal from Erin Yates at Dr. Galati’s office that his Bili and ALT are creeping up. She asked if he was having any fever or abdominal pain. So far none. He is on maintenance antibiotic that so far has been working fine. 

I also got a call from KLon. (Methodist Transplant evaluation contact) Actually she called Kevin who was on the bus to camp and asked him the same things she asked me but he said talk to my mom! She knows more! I actually missed her call. But when we finally touched bases she needed to confirm when we would be available to start the appointments needed for the two day evaluations and an email address to start sending the appointments to once she makes them. So, His timing is perfect. It looks like transplant evaluation should begin next week. Tiffany starts her job as a level 4 NICU nurse on days at Texas Children’s Hospital in the medical center next week too! Praising Him for working that out! He brought her from a hospital in Lubbock to Shreveport to Houston. She will basically be a hospital away when we are down at appointments! 

July 5, 2016

Kevin has had a much better week. He must be adjusting to the maintenance antibiotics because so far this week no fever has broken through and he’s feeling better. I checked on the transplant evaluation again. Last time I checked they said finance was the hold up. Today they said finance was approved on June 30 and Kilon (?) will be contacting us soon. Kevin had labs last week actually on his 19th birthday. They came back stable and to repeat in two weeks. (However, he is our teen camp counselor volunteer next week and so I might send him in Thursday or Friday since he will be gone all next week) I am praying that he continues to feel better and is strong enough to make it through the teen camp week next week in Arkansas. 

Wednesday June 22, 2016

Maybe I shouldn’t have updated. Kevin awakened with low grade fever. 100.5 so already called into Dr. Fainstein because when he said double the dose of Augmentin we don’t know if that means take two at once or take two that day:) and I’m hoping it’s a normal bug … 

Tuesday June 21, 2016

We saw ID today. The infectious disease doctor was the best! He walked in and saw Kevin up on the examining table and told him to hop down off of that. So he sat in a chair and we just talked. We answered his questions then we peppered him with ours. He wanted to hear them all first and then he said I have answers. He said I cannot make him well but I can stomp on the bugs. And he stomped his feet. 

Our questions:

•is he taking the right kind of antibiotics? •The right amount?

•how often should he be on antibiotics?

•when a fever breaks through and he’s on double antibiotic what does that mean?

•does he have to be admitted to the hospital every time ?

•can he have IV antibiotics at another facility or at home?

He explained that we all have thousands of bacteria all the time. Kevin’s bile ducts have them flowing like a water hose with mud in it. When it starts to slow down that is when the infection sets in. He asked him about his fever and symptoms. Confirmed this is exactly what he is dealing with and said he cannot cure him but will do his best to keep the infections further apart. 

Plan A: he put him on Augmentin as a maintenance dose for 30 days and refilled it 5 times. 

Plan B: if he has break trough fever he needs to double the dose and see if that helps if it is a low grade fever. If it is 103 then we go to plan c

Plan C: get to the hospital but call Dr. Galati’s office and have them contact him. And go in under the “23 hour day” for observation and IV antibiotics. If he improves they can send him home with one. If he does not improve he will have to be admitted. 

He cautioned that once the infection gets in the bloodstream he can get very very sick. I tried to get a question out without tearing up but just going into this office I wasn’t expecting Kevin to weigh 165 with his phone in his pocket and tennis shoes on. I was already heading off the shock of another five pounds down. And he’s been eating well and feeling ok since Friday before the wedding! So it was a struggle. I only was trying to ask if/when he is at that worst with fever and chills and nausea how long does he have or can everything shut down??? Not sure I got that across but he did not have one Kleenex. He offered me a glove! Lol! Anyway, he was very informative and funny. 

He point blank asked where is he on transplant. We replied just the initial call. They are due to call us back. He said if you hear nothing else today–call them now. Call them and tell them you are here and can we stop in to see what next we can do to get the evaluation started. He said he is very aggressive! What else are we doing he asked! What else is going on all summer!? You’ve parked the car! You’re here! 

He wanted to know where Kevin attended college. He was happy to hear Knoxville and not some town like Crockett Texas where there is only one home health plan! He said he can set him up on IV antibiotics in college if he needed to. Obviously we are rethinking college for now based on transplant talk. 

So out the door we went and I literally stood in the hallway and dialed transplant. 

I spoke to a gentleman. He put me on hold a bit while he reached out to Angela to see where Kevin stood. He said financial is the hold up for now and he is sending a message to them. He said K-Lon (?) will be calling soon once that is freed up. I said can I have financial’s number or can I contact our insurance. He said no that it’s definitely something they do on their end. I did tell them we were suppose to hear from them again at most in a week and a half and it has been 2 weeks. (And 2 days but whose counting!) He asked if there is anything else they can do and I said we were just waiting. He said he completely understands.

I was very thankful for this entire visit. In our pastor’s message Sunday night he mentioned a phrase that appears in the Bible only three times. All in 2 Kings 4. “And it fell on a day…” I say find the podcast and listen to it because I may completely butcher it! But it kept going in and out of my mind. Even the previous week as I was thinking how much better Kevin has been and how great God is for answering prayer that hearing those words and in the context of his message I know it is exactly where we are. It fell on a day … Something has changed. It had to happen at some point and who knew when the day would come but it fell on a day… Having so many great days in a row and it all had to start somewhere. The ID Doctor said to live your life. Don’t stay holed up. Leave the theater when you hear the cough but get out and don’t stay confined. Exercise. Have plans. As much as he feels like it. It was just so hopeful. My heart is full and blessed. And it is what Kevin has been doing. When he’s down he’s down and when he’s up he’s up. I like him to be up and going. I want him to get all his energy back but am so happy for this plan. So blessed we got to see the infectious disease doctor today. We tried to in the hospital and tried to get in sooner but it fell on…today. 

Saturday June 11, 2016

Let me just say on this day Tiffany and Grant had the most enchanting and picture perfect wedding and Kevin was not in the hospital! He actually turned a page for the rehearsal and has stayed strong! Now he finished his last double dose of antibiotics on Saturday June 18. Just in time for the infectious disease doctor appointment. 

Thursday June 9, 2016

I’ve done a lot of “falling at His feet” this week! 

Kevin saw Phuong with Dr. Galati as a follow up from Tuesday’s fever and this week’s fall apart!” So far we are all good with holding tight and riding it out as long as he is feeling better and not having fever. Big discussion about all his symptoms especially fatigue. He was encouraged to eat 6 small meals and especially eggs and peanut butter (almond butter from trader joes) things that are easily digestible. He asked Kevin if he liked peanut butter and I think was expecting a yes and Kevin was well, not really! We joked that he likes jelly! Dr. G was like who ever heard of a j sandwich! 

The question I have couldn’t be asked without a few tears seeping out. I don’t even know how to word it. Today Kevin even commented as we walked in the Scurlock tower that he feels like that appliance that isn’t working until it gets taken to be repaired. He is feeling much better. At this moment. And while we were in the office. Such an answer to prayer! But my question is when this happens and he has that fever and he is so lethargic its just too much. Is this just what we are dealing with. I needed confirmation of some type that these symptoms will recur and I compared it to like an ear infection protocol. Basically when Tiffany was first diagnosed with “reactive airway disorder” when she was little they gave us an asthma action plan. That’s what I need! It was a very very good discussion. 

The phone systems are three days old. I told them I cannot get a person and I’m limited to 5 messages a week in the patient portal. Dr. Galati seemed surprised by that and said he would send Araceli in to talk to who is option 6 when we call. (Medical assistant) Yesterday Araceli was my angel from the Lord! When we finally connected I was about to hang up after she told me Kevin needed to be seen today and she said Mrs. Beth I just want you to know that I would be doing the exact same thing you are doing if my child was sick. Just so blessed by that. She did not know I waited on hold for so long. And if I leave a message and haven’t heard something in 30 minutes I need to call right back. She also said that after option 6 if I need to reach her to call back and press option 8. I never heard that as an option! So good to know. I feel like I informed them of their phone system and patient portal and they helped me with doing exactly what I’m doing. They want a phone call if he has fever. They do not want to be surprised by anything! They want in the Kevin loop. Meanwhile we are moving forward with transplant discussions. 

He asked Kevin not meaning anything against me but is what I’ve said true to how he is feeling. Kevin agreed. So I’m not hysterical. Not that he was really accusing me of that:) He point blank asked Kevin if he was tired because of being depressed. Kevin said no. Keith chimed in and told the doctor Kevin is never bothered by anything. Kevin told me after that he kind of thought the doctor was taken aback when he said he wasn’t depressed. He did say a multitude of things Kevin is facing can cause fatigue. He definitely wanted to rule out depression. When the infection breaks out it is fatiguing to fight. Low blood sugar. Various things. I’m telling you it just helped hearing all this it connected some dots. 

We asked about any medicine that he can take to help with heartburn that will not counter act the antibiotic. He sighed and was like you know he’s on a lot of junk. He recommended taking anything OTC liquid two hours before the evening meds. So we will try that. You just never know when that stuff will hit. 

And it’s wedding week people! Tiffany gets married Saturday. Ruth is in from Florida so she hopped in the car along with me and Keith. The boys were so excited!!! They we’re like oh you’re coming! They looked at each other and said, “Good! You can talk to Beth!” The crazies!!! She told me what Ethan highlighted in his Bible this week and it was this verse from Mark 7 about the mother who fell at Jesus feet for her child. You know it’s a familiar one but then it just means so much more when it is exactly where you are. 

“For a certain woman, whose young daughter had an unclean spirit, heard of him, and came and fell at his feet:” Mark‬ ‭7:25‬ ‭

Tuesday June 7, 2016

11:00 pm

We heard from Dr. G around 1:30 today. He talked about bringing him into the clinic or admitting him. I went over all the symptoms. He is especially tired. Had side pain. Lower. Back. Right. Then tonight front full liver. No high fever since this morning. But took nausea medicine twice today. Early. And just before bed. I would say he is not looking good. I can tell he is not feeling well. It’s all just not good. I would say I can hardly take it but I am not taking anything! Kevin is. Dr. G said get labs immediately. And we will regroup in the morning. Also he reminded me of the cycle that he spoke with us about. He asked how Kevin feels about transplant. I said he is fine with it. He wants to feel better. I told him we couldn’t get into infectious disease until the 21. I know they will be able to help in times like these. He also said that he is very concerned about that fever of 101 in the face of being on a double antibiotic. I told him Kevin is very tired today. Very tired. I couldn’t get him to come down the steps he just didn’t have it in him. I told him my daughter is getting married Saturday…

I made Kevin eat a banana earlier so he could take Tylenol to help with the fever. I got him his favorite Gatorade Fierce Grape. I said this is like those Methodist cups they bring when you check in the hospital. I want to see it gone! He did perk up a little. Going to labs wiped him out! He slept the entire way home. Was nauseous. We waited a while in there because since it was so late the great Tech said we needed a stat order to be able to get them quickly. So I called in to ask for one. They have a new phone system and I’m pretty sure I got lost in the loop. After patiently waiting 20 minutes and hearing all the great information over and over I hung up and kept calling and pressing options. Unfortunately not one option got me a person. I either got a recording or I got the your call will be answered in the order it was received. So I kept hanging up and dialing. I also sent a patient portal message to please fax a stat order:) I got someone and they got the message to the right staff to get it. The tech today we have had before. She loves Kevin. Hates to see him not feeling well. She EVEN remembered my daughter was getting married this week!!! She said if I could only bring him to her church he would get healed. And she told Kevin he must have a call on his life because that devil is fighting him. He must be going to be doing something big for Jesus that devil don’t like. Do you love that!?! I love it. We stayed in there for 45 minutes after labs were drawn. She wouldn’t let me leave until I heard from the doctor and gave them the fax. So we left. Then later she called me at home to tell me that it’s all taken care of. They sent the stat fax. We are trusting Him and absolutely taken such good care of. 

I was numb. I told Kevin I was. I prayed over him. Then once he was settled I went to my bedroom closet and just got flat on the floor crying out to Jesus to please heal my son. I talked and talked to Him. Praised Him. He is worthy to be praised! I needed strength for this day that I could only get from Him. I am surrounded by the best too. Kevin is cared for this I know. We are loved. 

8:30 am

Please pray for Kevin. He woke me at 6 with 99.5. Chills. Nausea. I checked on him now he’s 101 (2 hours later.) Pain in right lower back side at a constant 3. Makes me numb. Very. Very. Numb. He’s on his double antibiotic. And that new anti fungal from the scope last week. He’s had a headache on and off the last three days. Letting him rest. And praying for healing relief. 

Thursday June 2, 2016

We got the call from Angela who received the referral from Dr. Galati’s team for Kevin to be evaluated for liver transplant. She is with the Houston Methodist Transplant Center. Kevin spoke with her and answered questions she had about his health history. We will be hearing from them again in about a week and a half. 

Wednesday June 1, 2016

Kevin had an EGD procedure today and Dr. Galati performed it. My prayer was for answers and I am praising Him for one! 

Kevin has candida … a yeast infection. Dr. G. came through and explained some things afterwards. Asked Kevin to actually point and draw where he has been hurting. Then he confirmed that’s where the yeast was showing up in the scope. He gave him a script of fluconizole for it. He should be feeling better in a few days from esophagus stuff:) He did take a few biopsies of some areas and will get results back from that in 5-7 days. He has slept all day. We had to leave the house at 4:30 am so he has had a long day! 

Dr. Galati also asked if we had heard from transplant yet. We have not so I am expecting those calls anytime. 

Another praise. We heard from the ID…Infectious disease doctor that we were referred to by Dr. Galati. That office will see Kevin June 21! 

Last week’s labs have Kevin as stable at 2.6 bilirubin. Hoping this week’s are lower if not the same. For the record this morning before the procedure his temperature was 99.7 and to me he looked yellow. He said he told the doctor he has been tired. 

Thursday May 26, 2016

I reached someone at Dr. Galati’s office who was able to read to me the message in the portal since its down:) Let me tell you there is not an option for that when you call and get their answering choices. Very thankful for the friendly staff there and courteous attitudes for our dilemma. The message stated that yes he needs to see an ID in an outpatient visit. They recommended Dr. Grimes. So I called them next. This doctor cannot even schedule Kevin until they see his medical records so she gave me the fax number and I called Dr. Galati’s office right back. They did say in the message to let them know if we had a problem scheduling that appointment. So, we did. And again Dr. Galati’s staff let me know they would send over Kevin’s latest labs as well as the notes from the last two office visits. (They asked me what did I think they needed and I was like I actually have no idea!) I did tell Laura who answered the phone at Dr. Grimes that I would probably be calling everyday until we have enough information to schedule an appointment. She said that was completely fine:) 

Also in the message read to me Phuong wrote that a rheumatologist out patient visit is not required. I would like to know the why behind this just for closure. We had no idea what to do with that information when they told us at the hospital to seek that second opinion. So will remember to ask later when the portal is back up and running. 

Wednesday May 25, 2016

*im really tired writing this so mental note to proof for common sense in a little while.:) Kevin had labs done today and we scheduled his endoscopy for June 1. Dr. Galati will perform it. Kevin has really been doubled over at times with heartburn and acid reflux. It’s a dilemma to time the medications for sure. One antibiotic cannot be taken with milk or calcium. So that rules out all things over the counter like Tums and Alkaseltzer tablets. I just feel for him. 

I missed a call from Phuong. Her message said she was touching bases about the questions I had from yesterday’s visit. She also said she would drop the information in the portal. Of which I checked and the entire portal is down. So. EPIC must have gotten a hold of that too??? Reminder to call of I haven’t heard or if the portal isn’t open. 

Tuesday May 24, 2016

Huge points for me for remembering to trade cars with Keith for today’s visit. He gets my Mini Cooper convertible I get the luxury cruise liner of a Ford Expedition! When Kevin isn’t feeling great it’s the only way to travel to the medical center. I’ll admit I was a little nervous about self parking in the garage in it but once I ducked down all the way through the 9 stories and arrived on the roof of the Scurlock tower I could breathe again! 

EPIC system change up must have gotten ahold of the doctor’s office as well. We had a bit of a wait. But once we were called back Phuong kept us for about an hour going over our entire list of questions:

•he went in struggling with side pain, heart burn, and being tired

She wants to scope him next week. Also mentioned that it could be Hyploria. (? Spelling?) 

•hospital discharge questions:

     –Infectious Disease (ID)

     –Rheumatologist 

So these two were mentioned this last hospital stay and Rheumatologist was mentioned at a previous stay. I knew they wanted Kevin to be seen by ID but we didn’t stay long enough. So am waiting to hear what she has found out about seeing one or both outpatient. I know I got those overwhelmed tears asking about these because we just don’t know what to do with the information when the doctor walks in the hospital room and says see these types of doctors or he recommends us to. First, I don’t know a particular name for either type. Why would we? What can they specifically do? How do you think they will help Kevin? And where did this come from? Why now? Not in any voice other than simply what? And softly hug? I’m not frustrated just blessed and overwhelmed and literal! I know they all want what is best for Kevin. But when I don’t understand how to do the follow up its just too much. So she explained that ID could really pinpoint the type and amount of antibiotic he needs. The rheumatologist she looked perplexed. So I have her the doctor’s name who mentioned it and she was like. Oh. I know him. I’ll text or ask him what angel he is thinking. Whew! 

I also asked just how much history do the attending physicians see on Kevin. She replied basically only what has happened in the hospital. Because if he is seeing Kevin’s entire 5 year complex history that’s one thing. If he is only seeing this weekend and the last couple of stays than he’s not not truly giving us complete information. Something is missing. So I was relieved knowing he couldn’t see 5 years because I thought 

     –MRCP report said “prominent right pericardiophrenic angle lymph node” and to “follow up” can signal infection .

Waiting for the appointment I had all of Kevin’s medical records from the weekend’s hospital stay. I noticed the MRI/MRCP that they said looked clear had the above words in quotations. I asked Phuong what they even mean and where on earth on his body is this:) Overall she was not concerned. She said it usually pinpoints infection. And since he is about to be contacted to start transplant evaluation they will a heck him throughly. Teeth. Bones. Support. Financial. Insurance. etc. So for us to remember to kee that in the back of our minds. ✔️

•follow up on our medical letter of necessity since Eleanor isn’t at the front desk anymore. 

I quickly briefed her on the insurance company denying benefits for the last two hospital stays. She wanted the information sent to her. She wants Kevin to have an endoscopy. Dr. Galati does these EGD procedures himself. Set up for next week. June 1. 

•transplant evaluation process MELD score is 17 based on May 16 labs. 

She really thoroughly explained the evaluation process. She and Dr. Galati are both on the team. We had lots of questions and she gave us many many answers. One thing she calculated his MELD (Model for End Stage Liver Disease) Score using these numbers:

Creatinine (kidney function), Bili, INR, & Sodium. She explained there are A+ livers usually needed for very chronically ill patients. The B liver can be used for Low MELD in need list. 

Hospital Stay 3 — 3/20/16-3/22/16

Sunday May 22, 2016

7:00 am Kevin had an MRCP 

9:00 am Dr. Nguyen stopped in and saw Kevin. He didn’t think an ERCP is necessary because his numbers are better his bilirubin is down. Only if there is a dominate structure on today’s MRCP he would need one. He will check back later with results. We mentioned Kevin is starting transplant evaluation and he agreed after several episodes/ cycles it’s important to track them. He said maybe “chronic” antibiotics or long term treatment low dose but infectious disease will help us with that side of it. We explained that he has had 4 weeks of no antibiotics and somewhere in the middle of those weeks he had very normal and great days but then fell apart again. He is currently still dealing with some nausea. 

1:30 PM The MRCP was clear. The doctor is releasing him to go home today! He still will be on oral antibiotics but can rest more at home now that his levels are lower;)

Saturday May 21, 2016

Kevin was moved up to the 7th floor. I knew when we came to visit after Tiffany’s church bridal shower and stepped off the elevator on the 7th floor because one nurse stopped us as she was heading out she recognized us. She asked me what room was he in. I went to check the text from Keith and a CA saw me and said 765. It’s precious and sad all in one blow! 

Keith and I tag teamed today. He pulled in and texted and I ran down and got in to head to Tiffany’s bridal shower. We didn’t even have to park the car. 

They saw:

Dr. Nguyen- he ordered the MRI/MRCP. (Keith might get fired from this job of note taking cause he can’t remember which of the two!) 

Dr. Seelbach- he thought Kevin was looking good. They discussed previous treatment for the two ongoing things Kevin has (AIH/PSC) and will speak with Infectious Disease to get another look at it. If it’s bacterial. And to see what they see. 

As I told a friend earlier my heart was in two places today. Half at Tiffany’s shower where she was honored and blessed by so many of our wonderful church family. And the other half at the hospital with Kevin. We all invaded his room after and played Disney apples to apples. I know everyone who stepped in for the random things were shocked again to see Kevin in the bed. One lady hopped in to put a band on him and she was full of energy and told Kevin no way should he be in here and to get out! He is too young she said he needs to get better! Our thoughts exactly. 

Friday May 20, 2016

2:30 pm. We touched bases with the staff at Kevin’s doctor’s office around 11 and by 11:15 they called and they said he wasn’t where they wanted him to be. So they direct admitted him to Methodist Hospital. We arrived and were simply waiting for the room to be ready when Brandi (Dr. Galati’s staff) found us, sat down with us, and explained what all they were looking for this time in the lobby! 🙂 She said most likely these will take place: an MRI, an MRCP, strong IV antibiotics, and contact with infectious disease. She asked had we seen them ever before. We said no. So one more thing to look over Kevin and rule out. I think that’s pretty impressive to have had her find us before she left for the weekend. And weird. Yet more impressive than weird. You just don’t expect it. But love it all the more. 

4:30Settled in the room on the fifth floor. I like all the people here but the room is different. Kevin shares a bathroom with the neighbor next door. On the 7th floor we had our own private everything. I’m a little weirded out just because of the germ factor. Like. I didn’t pack Clorox wipes. And am I allowed to ask what the guy next door is in for?! Yeah. Seems kind of need to know information to me. 

It did take many times asking about when the orders for IV antibiotics would start. At one point they said no orders were in yet that they could see. So we said well, it’s only one of the main reasons he is in for. They said they would page Dr. Carbaju (?). I replied. We don’t know him. He doesn’t know us. We’ve never seen him. How will he know what Kevin’s doctor’s office wants? Also Keith asked me if I could contact Dr. Galati’s staff. Well, earlier today I sent a message to start all this and a note in the portal popped up saying I am about to send my 5th message this week and am only allowed 5. So, no. I can’t message them until the week is over patient portal wise! lol I totally get why they have that setting. I never actually needed it until this week. They wanted a report everyday since Tuesday. 

The first IV was placed too close to the bend of his arm. And he asked if I could ask if they could move it. We thought let’s move it before all the antibiotics start. Well, they came in and started them anyway. Said they would move it once these stat drips started and they weren’t as busy. So. It was getting late. Kevin was uncomfortable with the IV. Not to mention just feeling horrible. (I’m thinking let’s get this liver and bile ducts cleaned up!) Drip after drip was replaced. I finally asked when would the IV be moved. He is uncomfortable. The nurse went to get the charge nurse and while I was down the hall brushing my teeth she came in. Wanted to move it to his hand. I looked at Kevin. He didn’t want it in his hand I could tell but he wasn’t going to tell her. I already knew he just wanted it comfortably down more on his forearm. So she placed it there. Then she asked after switching the drip to it did he want that first one removed. Kevin said yes:) After she walked out the door I leaned over to Kevin with my fist on my forehead and whispered: what does it take and I’m sorry. Like why would you want it sticking out serving no purpose? We cannot know. Maybe there’s a protocol we know not of. For the record we now know before the first IV is inserted exactly where to tell them to put it. I’m thinking we will be the Starbucks of hospital IVs! 

All the while we had to remind them of Kevin’s other medications. Ask when they would be given or should we get the ones from home. The one he takes in the evenings they said they would bring in the morning. I said well then he will be missing a complete dose. Thankfully they got all of that straightened out. And brought his evening meds this evening. We may have “bad patient” by our name in the file but really I am being pleasant and I think informative. And somewhat advocative. (Not sure that’s a word but it means mama advocate in the most intense yet friendly way:)

May 17, 2016

4 Weeks And He’s Falling Apart Again 😦

Well, Kevin made it between infections 4 weeks. He actually started showing signs of not doing great last week. He struggled with a migraine of which I would say it was a really rough one. He had me up all through the night with him trying different things and medicine to relieve the pain. (Tuesday the 10th) Then around the end of the week he was noticeably more tired. And I thought. Hummm. He could just be normal. He has started helping around the church and having longer fuller days. Then Friday morning the 13th we were preparing to leave for Lubbock to pack Cole and UHaul him back here and Kevin had a temperature of 99. His labs came in too and his Bili level was “trending slightly up but stable” they said at 2.9. It concerned me enough to grab all the medicine in the cabinet to take with us to Lubbock just in case. He slept the entire trip. Then Saturday in Lubbock he awakened with chills, nausea, and a low grade fever of 100.6. So I made the phone call to the doctor. And we got busy packing and loading Cole. I realized Kevin was holding his own and Keith told me his back up plan if Kevin got worse was for me and Kevin to just leave and he and Cole could finish the job. Sunday was his worst day. The trip back to Houston was horrible for him. He was mostly nauseous and it killed me to watch him not eat all the times we took a break for food. I knew Monday we would be getting in contact with the doctor for sure. He could hardly sleep Sunday night from the nausea.

Monday from my perspective. So it’s May 16 and we got in from Lubbock at 2:30 am. Kevin was very ill. Couldn’t find a comfortable place. I had gotten a random patient portal message that said his labs were down to 1.9 and that we could extend his labs for two weeks. This should have been good news but it didn’t match with what I was physically looking at. So we slept some then once the office opened I put in my first call. After that message was left and Caleigh was dropped at school I tried to rest. I went ahead and tried to open the file of labs just to look at and realized it wasn’t attached. So I called the office again because I realized that just maybe those labs were from May 3 since it had 9 different things and his usual standing order Monday labs have about 5. No one at the office could actually help with my question. Here is where I was absolutely unable to sleep because of fear and anxiety. I knew I did all I could so far by calling twice. I also know that doctors are on procedures and can actually have days off. The operator informed me when I asked for specific people who we have seen that they weren’t in the office for the day. 😦 I was hoping to get him in on a sick visit but no one was in the office and or they were totally booked. I also know if he was sick enough we would go straight to the ER. Definitely have done that before. 

But I am also so very literal. The last word said extend the labs. It was Monday and time for labs. And he wasn’t looking great. And I couldn’t get a call back. I know the office help had to be swamped. So. Keith and I decided to return the UHaul to Tomball and take Kevin for labs. What could it hurt? 

I actually sent several messages in the patient portal to Erin. Especially since she was in communication with us dropping labs and checking on Kevin last week. I am limited in those messages because it counts the words. I let them know Kevin wasn’t feeling good. That we called the office Saturday. Well, the answering service. I also mentioned that they may want to check on that service because we did not get not one call back even from the service asking if we heard from the doctor’s office. Maybe that’s just what pediatricians offices do! I knew in the back of my mind if I absolutely needed to contact someone I could keep calling. I’ve totally done that before;) 

Sure enough. Erin called late Monday night! She said she likes to poke around in the patient portal especially after taking a day off because she is usually hosed the next day. And I replied I’m sorry! I hosed you at least three times!!! She did say she wanted to see Kevin the next day at 1:00. She was fitting him in. And that Dr. Galati would be with her. So here I was all day “Beside myself” trying so hard not to be and it worked out. It just worked out. And she was about to have us go early for labs elsewhere and I told her that we had them done anyway earlier that day (Monday) and I think I could feel a high five through the phone! We did good. 

I am forever thankful for friends and family I can share this with so openly. We did see Dr. Galati and Erin today. It was a tough visit. Kevin does need to be back on the same two antibiotics. Erin also said when I told her Saturday I had my cvs located in Lubbock and ready for the call that she couldn’t believe I didn’t have antibiotics on hand. She said she would take care of that! Sure enough now I have one “in my back pocket” for the next time If something like this happens again. She said call it in then get him in as soon as possible. I’m calling that a genuine mom card right there:) 

In today’s visit we had a two part conversation. Part one we learned his bilirubin level from yesterday went up to 3.6 from last week’s 2.9. They are starting him on two different oral antibiotics and want us to check in every day over the next two days. If he isn’t improving by Friday morning they will admit him for IV antibiotics. (He wants to know does he have fever, is he eating and drinking, staying hydrated, sleeping 20 hours, etc) 

Part two of the conversation Dr. Galati explained it’s time to talk about transplant. He thought we could push this out to some point or maybe never. But he wants to talk about it now. A way to look at this and not be as upsetting as it may all sound is to talk about it now. Evaluate Kevin. Let the rest of his team set their eyes on Kevin. His entire team wants to evaluate Kevin. He said they are a big team. A big consensus crowd. And sometimes they are tough at making decisions because they are like a bunch of hens with everyone chiming in what they want. He reminded us that his PSC patients they preach this to: early is better. If he passes through the system and they say you know what he’s a little early for transplant then go back and he’s early. But if the consensus is that they see where his staff is coming from because Kevin has had multiple bacterial infections and time between is shorter they may agree and say transplant now. He strongly believes the rest of the group will agree with him that this is appropriate. He recognizes that in 6 months if we don’t go forward with at least evaluation then things could get more complicated especially based on Kevin’s current track record. He said we all prefer to send our patients earlier. He reminded us that patients with PSC have like a wild card for bile duct cancer. Not that its present now but is something to consider. Dr. Galati wants to get Kevin on the radar screen earlier rather than later. This is a process that could take weeks. Kevin will be evaluated over multiple areas: medical, surgical, physical, education, support both financial as well as care. I feel like someone might come see if I have dust bunnies under my washer and dryer! Lol! Actually, they introduced us to a short version of this process and said we would be meeting a lot of people and getting Kevin’s “team” together over the next several weeks. We are taking it one day at a time and one step at a time. We have many questions. 

I asked Kevin how he was taking all of this. He absolutely trusts the doctor and knows we are in the best hands. But more than anything else he just wants to feel better. That makes anything I may be struggling with as a mom just fade away. His quiet confidence and complete calmness is contagious. (After a few tears on my part) 

For now, if he’s not better by Thursday night or Friday they will admit him for IV antibiotics. If by Monday his bilirubin level hasn’t changed then an ERCP may be considered. He is cautious about that procedure because every time that ERCP catheter goes up in the bile ducts of the liver if the liver is already not draining properly we could be creating islands of bile not communicating which could cause an abscess and lead to all sorts of complications. ERCP is a good tool but he cautioned it can be overused. Labs on Monday which would mean he is not hospitalized and is feeling better!

May 9, 2016

Three Weeks Today

Kevin took his last dose of oral antibiotics three weeks ago. He has been feeling fine! We are so happy to see this, and praise the Lord for each day he gets through! We try not to let ourselves go where we have just been, but cautiously approach each day. 

We are now dealing with our insurance company’s denial of Kevin’s two hospital stays. The wording of their denial of benefits would make anyone completely crazy:

“You did not have a serious infection.””You did not have a bad infection.”  And my absolute favorite: “You were stable.”

We are trusting Him in every detail of this! We are in an appeal and have asked Dr. Galati and staff to send appropriate letters as well. Keith thinks this is just an initial step most insurance companies take, and that I shouldn’t take it personal. I am openly trying and asking anyone I know to pray for Kevin to find favor with the insurance company and they will do their proper part. (And that I would not “stress this!”) 

April 26, 2016

Kevin had a follow up at Dr. Galati’s today. We saw Phong and Dr. Galati. He has been feeling and looking great. They are going to let him return in a month and after this next week’s labs he will possibly get to go two weeks between labs. We actually didn’t even have any questions. I did record this one as well because Dr. Galati wanted to kind of explain the next step. So below is a paraphrase/quotes from the recorded visit: 

    “Dr. Galati explained that he fits under ‘recurrent Cholangitis’ and it’s just one of those things we just have to watch. He has finished the course of antibiotics and he said we keep our fingers crossed, and we hold our breath, and we say a prayer that you have no more infection. He did mention that it may be that he doesn’t have any more infection. But, if it comes back and he starts having abdominal pain, fever, the bilirubin starts going up again then we have to entertain the thought that it’s another infection. Then that changes the whole picture here to say, now what. We can certainly follow through with another course of antibiotics, maybe another ERCP he’s not sure about that, he has to see that the drainage is going on. But he pointed out at that point he is getting into this viscous cycle of recurrent infection and what’s the roll over, transplant. That is one threshold to say if you meet this criteria then you flip that switch. Then with all PSC patients the risk of bile duct cancer (cholangiocarcinoma) is there. And he said they are always on edge to see that Kevin doesn’t show up with a bile duct cancer. Those in some cases can be transplanted. He said the challenging part about that is that it’s very difficult to diagnosis because the whole liver looks a little odd. All those strictures and beading. Then you can’t pick out, oh, this is the abnormal area lets biopsy that. It’s similar to the complaints people talk about with ovarian cancer, many times its diagnosed very late, tough to diagnose early, so with cholangiocarcinoma your index of suspicion always has to be very high to minimize the chance that you miss it. These are just the things that hang over everybody’s head you know and leads to anxiety. So. With that said he asked when the last Prometheus test was. He said the numbers are better. But for now we will sit tight. He said with Kevin he thinks we do better with small moves. He called him a small dial person.”

It was a good visit. Everyone was so happy to see Kevin looking and feeling better. Such a difference these last two weeks have been! We are praising the Lord for keeping Kevin stable!

Thursday, April 14, 2016

We saw Erin Yates at Dr. Galati’s office for Kevin’s two week follow up. The things I will remember about this visit are the personal ways I see them care for Kevin. Suprenna checked us into the exam room and she made a comment to Kevin that he was suppose to settle down and didn’t she tell him this the last visit. (He had 99 at the last visit and the next day spiked a temperature that she remembered their office had to try to reach Dr. G who was in a conference somewhere. They couldn’t reach him so they called his wife. She called or texted him and Suprenna told us that her ring tone for Dr. G is “Houston, we have a problem!”) I just loved that. I now know when they say they are asking Dr. G, they will hunt him down if they need to for Kevin! But then she told Kevin how much stronger he was going to be after getting through all of this and that he’s handled it better than any grown man she knows. Loved that. Loved it!

Last visit Erin wanted us to see dermatology for a couple of things:

-spots on back and stomach we told her they were Tinea Versicolor normally treated with pill but the dermatologist knew Kevin could not tolerate that so he gave him a cream. 

-hand rash we thought was eczema but was also a type of fungal infection treated with a different cream

Both of those have been improving in the last two weeks. She was happy to know we followed up and that it wasn’t anything autoimmune. I love that when Erin walked into see Kevin she remarked: look, it’s my favorite family! We are loved at this place for sure.  

She asked him how he’s been feeling and he said he has had a good couple of days in a row. Especially since getting protonix to help with heartburn. And in the last two weeks since seeing her there were exactly two days that he felt great! 

She explained that his stable bilirubin of 2.2 could just be his new normal. But once he finishes his antibiotics and it goes say up to a 4 then something is brewing. Anyway she said keep labs weekly and follow up visit in two weeks. 

We discussed his weight loss. Actually he is at a good weight but she said globally he has lost 25 pounds. She did explain to him that he would probably be more of a grazer eating several small meals. So to think along those lines. And it made sense with how he has been eating once he was able to get past the heartburn. I told her before that he would be hungry, take a bite of something then be done and hurting. So thankful for the protonix called in earlier in the week. 

Note to self: I recorded this one and will listen back to fill in any details later. For now just typing what I remember without my notes in front of me because I had a moment. 

Wednesday April 13, 2016

Kevin had a really good day today! He got over 6,000 steps on his Fitbit. He just looked better. The pain from heartburn has been relieved and he’s only been on the protonix for two days. I sent an update to the “SteveCarrieKeynaPattiBillBethJohnJim” group text with this news and love what my sister Keyna responded with: 

“Pain is a terrible companion. It’s very selfish and demands all your attention. Patience , love and prayers are it’s weakness. Keep giving him all that and he will beat it! Love and prayers to all of you”

We appreciate all the love and support we get from so many! 

He had an eye appointment yesterday as well. They are keeping an eye on his optic nerve through images because of his low dose steroid use and increased risk of glaucoma. He said for now have follow ups every 6 months. Everything looks great. 

Tuesday update:

Hooray! My patient portal blitz got through! I heard from Phong. She apologized for the confusion and immediately sent over a script. 

Tuesday, April 12, 2016

Kevin’s Bili from this week is staying stable at a 2.2. He is struggling with something normal: heartburn. I sent the message below after calling the doctor and getting no return call. 

“I left a message yesterday for anyone to call us back. Kevin is struggling with heart burn. In the hospital they gave him something called protonics?Or rec. an otc med. I’ve given him Tums and Alka seltzer new chews. The lady who answered the phone yesterday told me to call the hospital? I refused. I cannot imagine who I would even ask for over there. So she said she would get the message to any of the people in the clinic. I never heard from anyone. Not sure what to do:)”

 I do realize it was a Monday. And busy. I also realize the lady answering the phone has a job that I never want. But with everything he is on we feel like we are not going to just go get anything! My mom told me about the new Alkaseltzer chew tabs. I was hoping it would be a step above tums. He’s miserable. Food is not his friend. He is down to 173. 

I blitzed them after lab results came through earlier today in the portal. Am bound to hear something he can have for relief today. 

Tuesday, April 5, 2016

Kevin’s labs from last week: Bili 2.2. So, stable from when he left the hospital:) I’ll take it. 

He had a better long weekend.  It has had its moments. We are watching him like a hawk! Could be the strong antibiotics causing queasiness. Could be something else. He weighs 175. And I’m watching that:(

Thursday, March 31, 2016

4:39 am Kevin called and awakened me. He was feeling nauseous and had a fever 100.5 by 5 it was 101.1 chills right lower side pain. Pointed to bottom of liver maybe but also to back right side. (?)

Also complained of heartburn or chest pain. Gave him tums first. Gave him Zofran for nausea Dissolved under tongue. And Tylenol for fever. 

6:10 am the fever was down to 99And he was feeling better. Heartburn was better. 

Sleeping:)

Before giving anything I just sat by his bed and prayed over him: Lord, help us help Kevin. Heal him. Help him. Give wisdom to the doctors. Help them know how to help heal him. We need your strength. We know you know what is going on and exactly how you will use him. We know the doctors explain a little of what they think is happening but you know. You gave him his life now please heal him he wants to give it back to you. He has given his life to you. We praise you Lord. 

Obviously we are watching him closely and will put a call into the doctor once they open. Will sleep for a bit before then. Just asking for specific prayer now because he is home on 21 days of oral antibiotics. And this morning seems like the beginning of another trip downtown. 

I climbed in the bed beside him and watched his countenance change. His fast talking slow. He fast talks with fever. And the bucket went to the side. I left out knowing he is resting and I am praising the Lord for Tylenol and Zofran. We need wisdom for each step. 

And possibly, sleep!

2:55 Erin Yates called 

She called to check on Kevin. Her boss hasn’t responded yet. 🙂 For now I told her he has been good. No new fever. She said that obviously when there is a fever and you are already on an antibiotic it means one of two things:

1- your bile ducts are clogged and it isn’t getting through (which Dr. Nguyen doesn’t think as of Monday in the hospital)

2- you have some type of a bug that the antibiotic isn’t responding too. It may mean he needs a different antibiotic. 

 For now. Keep an eye on things. Remember it’s a 24 hour hospital. Call if he worsens. Go in. She will check on him tomorrow. Keep him on Tylenol for fever. 

Wednesday, March 30, 201

We had a follow up to his hospital stay. I will add this appointment was at 9:30. We left the house at 8. Got there at 10. I did call and tell them Houston traffic on this rainy day was a parking lot everywhere. They were so sweet and said they understood and to be safe. Takes all the stress away. Actually this was originally scheduled as a follow up after the Spring break stay but since he got out again Monday they said just keep it. It was a good thing we had lots of questions. We spoke with Erin Yates PA for the first time in person. We have now officially met the entire team down at that office! The clinic and hospital. She was very thorough. We talked with her for 40 minutes. It does feel good to know that they really know Kevin and once again we have heard that he has a “unique presentation” of liver disease. She also knew his history and told him he gets a gold star for highest liver enzymes ever as a 14 year old. I told Kevin now that is something for the resume! Lol! I will have to remember to update his more specifically later. We do need to have a dermatology check. It’s just time.

*I recorded this one to post specifics later…Too tired right now. 

Hospital Stay 2 —  3/26/16-3/28/16

Monday, March 28, 2016

Kevin is being released! 

We are waiting on discharge orders. We saw several doctors and I’ve summarized each bedside chat below. (From most current to earlier in the morning)

Dr. Seelbach

•he stopped in for the first time this stay. We had a different attending doctor over the weekend. He said Kevin’s kidney function looks great, his liver enzymes have improved and thinks like the other doctors that he should be able to go home on a 3 weeks oral antibiotic treatment. 

Dr. Nguyen 11:30 Methodist

•he stopped by to look over Kevin 

•at this time he agrees with the other doctor that no ERCP is needed 

•if bilirubin gets up in the 5’s again he might recommend it but for now longer home antibiotics and he should be able to be released today 

•said at home antibiotic treatment is just as effective now

Brandi March 28 11:00 am Methodist 

•Recalled his last visit and how long he took oral antibiotics. 

•remembered if he was still having any diarrhea she was wanting to test for anything gastroenteritis 

•noted he has to be careful with what he eats

•Bilirubin is 1.9 which is good for Kevin

•noted that his autoimmune hepatitis is still not quite controlled. We were/are scheduled for a follow up this Wednesday for the last hospital stay follow up. She wanted to be sure we checked the metabolites for one of his meds. Also she wanted him to have a standing order for labs. 

•Dr. Nguyen should stop by. They called him to check in on Kevin

•possible Cholangitis but nothing remarkable and no need for the other test and procedures he’s had done before since he isn’t currently having pain

•she said she looked at his ct scan and commented to Kevin that his liver and spleen are huge. She drew a normal one. (I may insert a picture of the white board drawings)

•basically Kevin’s are almost touching to the point of like almost overlapping. So the tenderness is explained. They are beyond the protection of the rib cage she mentioned. 

•normal for people with chronic liver disease to have enlarged spleen and liver

•whatever it is the antibiotics are working. He hasn’t had anymore fever. 

•will send him home with 10-14 day broad spectrum antibiotics 

•our question was how long do we wait after he has a fever to notify them. She replied that he has a lot going on and that we did good. Fever with him could be anything from blood stream infection, UTI, Cholangitis,… So we did perfect:)

•hoping for longer time between hospital visit!!!

•reminded us of protocol. During office hours they can direct admit to save going through the ER. 

•I told her we declined the blood thinner belly shot and opted for walking and she said that is standard hospital protocol which Tiffany already said. I just forgot. Plus. I’m not a hospital protocol person. So when they walk in with stuff I am going to ask all the 5W’s and the H! (Thank you precept Bible studies!) 

Dr. Galati and Phong Easter Sunday bedside visit: 

•he will only need to be here a few days and possibly be released as early as tomorrow. He is getting IV antibiotics to help “clear the liver.”

•explained the bile ducts even further

•Kevin may have been under treated

•he may have needed more antibiotics

•possibly could be a situation where the Cholangitis recurs often enough that he may need to be put on a transplant list

•he explained the MELD score transplant number and for now this is not an option for Kevin but he continues to prepare and explain this because it is a possibility 

•it could be Kevin will finally get over this infection and once it’s cleared he will be fine for a while

•it could be that the infection comes back no matter how much treatment simply because of the plumbing problem. It cannot drain. It is microscopic in those tiny bile ducts up in the liver 

•it is a system that like fishing on bodies of water all fisherman in a boat should be able to travel between bodies of water. And the liver is set up that way. All the bile ducts communicate and bile flows throughout freely. But in Kevin’s case the way PSC works is that sometimes the bile cannot drain and the ducts are narrowed or form strictures all around deeply within the biliary tree of ducts so there is no way for the fisherman to get back. This would be an instance after many times with fever and infection to start the transplant request. 

•he explained that a low MELD score can be petitioned with a letter from his office and they can ask for so many points based on Kevin’s history of being in and out of the hospital so much. 

•it’s an anonymous review board and sometimes they come back with maybe a smaller number of points or grant the points for like 3 months. 

•it sounds like it’s a complex system but at least we were introduced to it

•MELD score numbers: he drew a line. At one end is a normal score of 5 and the other end is a 40. Someone with a 40 has about one week left to live. They transplant at 30 +. He hasn’t officially calculated Kevin’s score but based on his bilirubin he is probably around a 9. He smiled and said no one will be talking to you at this number. You are not sick enough. 

•we get that and don’t think we are ready for that yet. We definitely are praying for the antibiotic treatments to clear him. 

•puss pockets: he explained that these start to form inside the bile ducts because of PSC causing blockage and the nature of this disease the puss pockets even though microscopic after time cannot be treated by antibiotic because nothing can get through. Thus creating an abscess. Once those are present this is communicated with the transplant board and that changes his MELD score. 

•home IV vs oral antibiotic: he said Kevin can come into the hospital and get the IV antibiotic and then is sent home with another round. They can play with this scenario. Maybe he goes home with more. Or maybe he needs to be set up at home to have IV three times a week or something like that. 

•basically different types of timing works differently for each patient 

•PSC already makes it difficult by developing in those tiny recesses that are hard to reach no matter how small the fisherman is

•We asked is there a tiny fiber optic something that could enter those tiny recesses. He said there is something called a mother daughter scope but warned the more you enter the bile ducts the more things are kind of blown up into the deeper recesses so he doesn’t want to go in there too often using Any scope but he would love to invent a fiber optic something to clean it out and then we would never hear from him again! 🙂 

•it is tiny up in there which is why Kevin tends to have so far this recurrence of Cholangitis

•we asked will getting a new liver take away the autoimmune hepatitis. He said it wouldn’t but the anti rejection treatment usually keeps it at bey.

•he did repeat if Kevin cannot clear the liver with antibiotics this is when the liver must come out. 

•Protein drink has been added for his nutrition. It’s a clear flavored type because of his recent weight loss. He needs good nutrition for complete healing:)

•Albumin protein infusion is being given by IV as well because his protein levels or albumin level was low. 

Happy Easter! Praising Him because He is risen and is our all powerful healer!!!

Sunday, March 27, 2016

Kevin is settled back in a room on the 7th floor. It’s after 1 am so his nurse said Happy Easter:) 

Saturday, March 26,2016

Shreveport 

We put a call into Kevin’s Doctor. 

Dr. Galati wants labs to see if he needs to head back to Methodist. 

Labs at urgent care in Shreveport Saturday the 26th showed an increased bilirubin 2.6 and another number I cannot recall that could show the biliary tracts are blocked again. (?) 

The urgent care doctor and Dr. Galati conferenced called with all of us in the room to decide our options. They were both very concerned about Kevin taking a “quick” turn for the worse and played it safe by giving him 1 gram of IV Rocephin antibiotic as well as IV fluids. Then we zipped our bags because his doctor wanted him admitted back at Methodist in Houston. He is concerned that he is having a recurrence of Cholangitis. Both doctors were just so caring and wonderful. The doctor who never had seen Kevin at the urgent care clinic was remarkable and had such a caring staff. One nurse said as we left that she would be praying for us. 

Friday, March 25, 2016

Fever 101.8 and nausea. We slept out on Mam Maw’s couches to keep a close eye on Kevin. 

Thursday, March 24, 2016

Keith and Kevin flew to Knoxville to pack up Kevin’s dorm and drive his truck home. They had a good visit with his friends and Dr. Evans. Kevin actually had a rough Thursday night.  

Wednesday March 23, 2016

Phong called with lab results. Bili is down to 2.2 She scheduled a follow up for next Wednesday. He took the last of the antibiotics. 

Monday 21, 2016

Labs at Tomball 

Hospital Stay 1  — 3/15/16-3/18/16

Friday, March 18, 2016

We are going home!!! It’s been a revolving door of doctors all morning:

12:00 pm

Dr. Seelbach 

•his bilirubin is 2.4

•he was happy to see this

•he is sending him home with antibiotics to take care of biliary bacteria

•he wants to see Kevin’s liver enzymes and alkaline phosphates go down. He reminded us that when they are elevated that equals inflammation (which we knew but it was good to hear again.)

•along with that he said he knew Dr. Galati was “titrating” things and he hopes things will set at bey

•he said most of the patients he sees are older like 60 with poor liver from alcohol or Hepatitis C. He said it is rare to see autoimmune hepatitis. (Sooo does this mean we are on the party floor!? If so Kevin missed out on the party!!!)

•he did suggest to possibly see a rheumatologist (autoimmune specialist) if these flare ups continue. He did admit that Dr. Galati will figure it out. Talk to him about it. If a second opinion is needed for treatment. (I was like he was our second opinion in the grand scheme of things looking back from beginning)

•we are released to go home once the paper work is complete!!!

11:00 am

Brandi came in and went over a WEALTH of information. I completely chicken scratched up one page of my precept Bible study.

•good news he is getting released today!

•labs Monday or Tuesday

•clinic visit next week

•I did ask this: so what exactly has been going on. Like. If we were to be asked why are we here. I know we should know what we’ve been living but…(smiles)

•she gave this word: cholangitis (so an infection of his bile ducts. That improved with antibiotics.)

•while his body handled this at the same time it kind of was a bit much. Hence, the upward trend of the bilirubin. Anytime that is that high he will experience overall yuck (can you tell this bullet strayed from Brandi’s words to my chicken scratch)

•she recommends sometime this year a liver biopsy. Why: 1} the 2014 biopsy showed he was not Cirrhotic. His liver was stage 3. Stage 4 is the level once there that liver cancer screens need to take place every 6 months because of the risk for liver cancer at this stage. 2} she noticed “Sarcoidosis” in the 2014 biopsy results. (granuloma) I had her spell that word I’ve never heard it before so will have more questions answered later I’m sure about this.

•I could tell she really did some digging and exploring of Kevin’s file 🙂

•we went over dosage amounts for his routine medications since there have been some changes

•Ursodiol now 600 mg twice a day (2 pills 2 times a day with current script) we will get this followed up at clinic next week

•azathioprine keep the same for now. She and Dr. Galati are following his Thioporine  Metabolite levels closely for this dosage.

•she is asking for a migraine medication

•I asked for normal headaches which one: Advil or Tylenol. She said Tylenol and only 2,000 milligrams a day. She admitted Advil is better for pain but more of a risk for GI bleeding. (I told her we pretty much overdose on Advil!!!!! She discussed this and actually the dose of Advil is fine. Just not often and there is a max per day. And especially NEVER on an empty stomach!)

10:00 am

Dr. Nguyen (ERCP) stopped in.

•he was happy to see/hear Kevin had a good night and morning

•glad he tolerated normal food

•said his liver enzymes are improving (?)

For sure the bilirubin is 2. ?

•he explained the stent removal because the bile duct was open

•he was able to open up a 4mm balloon and said he’s worried about it happening again but thinks he will be able to just use the balloon next time (if)

•he mentioned something about the stent interfering with the cystic duct. (Not clear on my part if this meant the stent itself interfered or if having the stent in period messed with it)

•I need to call his office to cancel the procedure that was scheduled for Wednesday

•we really like him! He is kind

8:15 am

Dr. Khan stopped in just to check on Kevin. No new information available to him yet. We had a few random questions he fielded but was glad to see Kevin feeling better. He looked over the stent removal papers with us explaining that procedure and answering questions we had about the images.

March 17, 2016

7:00 PM

He is just back in the room:) did great. They removed the stent. Other than that we will wait for morning report. He took nausea medicine. But is talking. We ordered real food. He wanted cheese quesadillas and a Coke. Then the siblings made an appearance at the perfect time again tonight! Kevin showered and was looking and feeling better. We streamed a movie Pirates of the Carribean of which Caleigh has never seen! Stuff like that use to not fit her movie standard of “more friendship and less death!”

So very thankful for answered prayers! So many have lifted Kevin up!

5:10 ERCP

Kevin is having the ERCP scope now. Pray for Dr. Nguyen to see clearly and have a good picture of what is going on. Earlier today one of the staff mentioned that Kevin is a complex case:) Thank you! Praise that he made it in this procedure today and didn’t have to be bumped!!!

10:30 am 

•we finally met Brandi McCall, Dr. Galati’s acute care nurse practitioner, (she gave me her card or I am not sure what letters I might assign her!)

•she was very thorough

•we discussed his liver enzymes and his az. dosage (I was able to pull out Keith’s excel spread sheet of numbers and significant facts)

•it helped so much!!!

•she is ordering something for his migraine

•confirmed PSC even looking back to little things I remember them saying like beaded bile ducts and his MRCP and liver biopsies she was confident in this recent diagnosis

•waiting on what the ERCP finds later to tie all this together

•the bedside meeting was basically explaining the life of a PSC patient and what to expect.

•she did half mention Kevin may need to find an online college!

•also she said Dr. Nguyen will be his new best friend: needing a stent removing a stent …

•she went over the “protocol” for the future when Kevin has fever or chills especially a temperature over 101 to call them or if it’s after hours just get to this ER and they will be around to check on him soon.

•she also wanted to be sure we knew a liver transplant has been mentioned, and we have known that especially the latest clinic visit with Dr. Galati.

•mentioned how important it is to stay on top of symptoms so as not to increase the chance of really making him sicker thus putting him in transplant mode quicker. (Absolutely my words she said things more precise and clearly but I’m on rapid recall with Keith out of the room and Kevin asleep!!!)

•fabulous! Can’t say it enough! We are in the right place. I love her!!!!

Other than the way they have patients order food I am happy with his care here. (You have to call in your order. Maybe I’m old school but it’s just weird. So for example today I was up to call at 6:30, because that’s when they open, so he could receive his clear liquids breakfast before he went NPO for his ERCP procedure at 8:00am. And they said like yesterday he can’t have anything he is NPO. I replied but not until 8. Somehow the orders get in and maybe they see the time the order was placed and not the time actually on the order when it actually starts in real life??? So I press the nurse call and jolt out the door to FIND her because it’s a race against the clock. I have to get him not NPO so I can call and be on hold for 10 minutes then they have a 45 minute delivery time THEN it’s cutting it close! All I can say is Kevin was asleep. I think he would have slept through his nourishment had I not been here. And maybe it’s the mama in me that wants my boy to have his last broth!!! He’s been on clear liquids since we’ve been here so we gotta have em!!! At least this mama thinks so. Maybe it’s cutting edge food and nutrition and I’m just not there yet. I just think it’s weird.

10:00 am Dr. Seelbach the attending MD in the hospital stopped in:

•His bilirubin is lower 3.6 (from 4.8 yesterday and 5.1 before that)

•his alkaline phosphates he would like to see lower

March 16 6:00 pm

Dr. Nguyen (the doctor who placed Kevin’s stent 3 weeks ago) visited the room:

•MRI showed fluid around the gallbladder (acites?? Only I heard a form of this word)

•when he saw this he wanted the HIDA scan to see the function of the gallbladder

•initially the tracer wasn’t going into the gallbladder until he received the CCK and the morphine meds.

•the bile was flowing through the bile duct fine.

•He can’t see the stent except on an ERCP. Trying to get that scheduled tomorrow.

•it could be the stent is causing problems with the gall bladder.

March 16, 2016 Wednesday Methodist Hospital Day

The MRI showed an elongated gallbladder and right where the stent was that area was kind of fuzzy. Could be an occlusion. They would see this in the ERCP. Before doing the ERCP they ordered a HIDA scan to get a better image of the gallbladder. The HIDA scan is finished and he is back in the room. The ERCP could possibly be later or tomorrow so he is still on clear liquid diet.

March 15, 2016

Well, maybe it wasn’t a normal virus after all

Kevin was admitted to the hospital. They got him in for an office visit and the team decided to have him admitted for tests. He has not been feeling well off and on since Friday. Fever and chills along with pain and nausea came back Monday night. And to me, after the weekend we had, meant call the doctor in the morning.

They did blood work, an MRI, and the ERCP Doctor stopped by to check on Kevin. His bilirubin was high — 5.1 (I doubled over when I heard that number) So, something isn’t draining. Again. (?)

The ERCP procedure will be Wednesday. (This is moved up one week) The doctor wants to check to see if the stent is “occluded.” I missed seeing him but Cole and Keith gave me what he said. I was happy to know it will take place while he is in the hospital just because of the pain he experienced once we were home from the last one. I am calling the ERCP Doctor visit and the moved procedure one week early an answer to prayer!

And I am thankful for the insight the liver specialist team had to just look at him in the office visit and say they want to admit him. I wasn’t expecting it. But, will admit it’s a relief because I was running out of ideas at home. I mean. We drove to Bahama bucks to help cool him down. He was getting so hot. Not with fever. But just burning up and sweating through his shirt. He was sleeping in a recliner in our room so we could keep a close eye on him. I am calling him being admitted for tests an answer to prayer as well!

Late Macrh 12

He slept most of the day and the symptoms improved.  He ate crackers and soup and is sipping 7 Up. I guess he is allowed to have a regular virus and I don’t have to go straight to google “complications with a stent!” The on call doctor did call late afternoon. He said take him to the ER if symptoms worsen and to try to get in Monday otherwise. These words were said to me too: did you know our office is closed on Saturdays! I’m guessing he had a very bad day too. But he definitely heard from me not as Kevin’s mom but as Kevin’s patient advocate! Very thankful Kevin turned a page and praying he stays on this one through the night.

March 12, 2016

Kevin woke us up at 5:30 am with pain, fever, chills, nausea. That is a phone call to the doctor. 5:54 am, 7:18 am, 8:43 am, 9:51 am I did just that. I’ve asked to please call a different on call doctor. The last call the answering service said that the on call doctor is aware of the problem. That he called at 9:43 to tell them just that. So, I can only imagine that perhaps he is consulting with Dr. Galati about what to do or say when he calls me back. All I know is they look you in the eye when you are leaving their office and say call us with any pain, fever, chills, vomit. I walk away from those words thinking oh I hope that never happens. Maybe it won’t! And it has. And again we will wait. At least for now, Kevin is resting with an ice pack on his head and a vomit bucket close by.

March 5, 2016

Mr. Bili Rubin

Well, as I think back on what I meant to post and never have, I have to write this quick one. Because I need the laugh in my thoughts! Caleigh walked through and asked us, “So, how is Billy? And who even is Billy? I thought Kevin was the one who was sick!!!” Littlest sweetie! We do walk around and have walked around talking about Bili. Bilirubin! And at one time in my life I remember not knowing what that even was! Now she knows. And we have a new code name for bilirubin level checks: Mr. Bili Rubin. I will let Cole tell the story one day of her realizing Donald Trump is not Donald Duck!

March 4, 2016

Dr. Galati Follow Up Visit from Kevin’s first ERCP

Dr. Galati asked Kevin how he was feeling. He replied much better especially his energy level. A lot more energy.

He asked if he was still taking his antibiotic.  He has a couple more days of this med.

He mentioned since the ERCP Kevin’s numbers were coming down: bili at 2.2 which had maxed out at about 5.8. (Normal is below 1.0)

The doctor asked exactly what made him say he feels better specifically what is it that he feels better today than he did two weeks ago: Kevin said mostly not as tired no stomach upset.

He asked about his appetite along with commenting on Kevin’s weight loss.  Kevin has lost some weight but his lowest since his return from college was 180. He weighed in at 185 and we joked about good ole home cooking! He said I could move in with him and his roommate to cook for him…he’s sure that’s what he would have done…we needed the laughterJ

He asked he is sleeping ok: Kevin said yes.

He asked what he is doing about school: Kevin told him he was taking this semester off. Dr. Galati was very supportive of this decision even off the cuff offering Kevin a job at the office. They talked about summer plans and he relayed since he has kids himself in college that a semester here and a year there in the grand scheme of things is not a big deal. It just really is not. And he shared that he took over two years off between college and medical school. He said he learned a lot and was in the work force and was able to travel.

Any pains at all: a little bit in the right side.  We asked is this normal…to this he explained that they use to think patients couldn’t feel a stent that was left in.  But then once the stent was removed they noticed the pain was gone. So, Kevin is having some discomfort from the remaining stent. Kevin was actually at a 5 today on the pain scale and took a pain pill.

He asked when we’ll see Dr. Nguyen again (did the ERCP procedure) We actually had just heard from that doctor’s office’s patient portal as we were waiting in the waiting room! This was the message: “Hi Kevin, Hope you are feeling better. The path result from your ercp was benign, no malignant cells seen. Please call my office to schedule for ercp/spyglass for further evaluation and stent removal/exchange in 4 weeks.”

Dr. Galati explained that Dr. Nguyen will do another ercp. He will remove the stent, shoot another cholangiogram, and just see that there’s no grunge or sludge in the liver.  He reminded us if there is a fever day or night to give his office a call.

Kevin wanted to ask if he would be kept after this procedure since after the last one his body did not recover well at all.  The pain was so intense we ended up spending the night in the ER to manage it. But Dr. Galati replied it was tough to tell. It’s a case by case.

WHAT THE ERCP SHOWED

• There is basically bile duct disease through the liver
• It is what he thought: Primary Sclerosing Cholangitis
• What the next chapter will be is unclear a little bit
• What we don’t want to have happen he said was for Kevin to get into this “cyclical bouts” of jaundice–pain–fever because eventually as the stricturing of the liver may progress and does not allow the bile to get out of the liver bilirubin goes up, it becomes a very simple plumbing problem: the liver isn’t draining.
• This is a perfect set up for infection which is called cholangitis.
• There are certainly antibiotics that he can take.
• There could be a situation where Kevin isn’t able to clear the infection.
• Then you’ve got this chronic infection. He will not feel well. And all sorts of different things.
• The one thing to bring up which is the biggest complication is the need for transplant.
• Now, he reminded us he is NOT at that point yet.
• But, it’s almost one of those things that’s worth mentioning every time they see him. Not to drill it into him or pummel him into submission saying “you will be getting a liver transplant at some time,” but he just wants us to know it is one of the options.
• It’s not an option like an elective option…they will not do it for the sake of doing it.
• There are criteria such as a high bilirubin where an ercp does not fix it or recurrent infections meaning you have a fever and take 7 to 10 days of antibiotic you sort of get better and your bilirubin sort of gets a little better and then a month later it’s instant replay: and you do your 10 to 14 days of antibiotic and you sort of get better and then 2 months later it’s the same thing.
• When you map this out over a year you will say, hey, Kevin has been here 4 or 5 times with infection and that would be grounds to think about transplant.
• What happens is the bile ducts: he draws a normal bile duct that has a stone and explains how the bile ducts communicate with one another.  So, for example if there is a stone causing blockage and the stone is removed everything is going to drain. It opens up the channels.
•  
• But with PSC what you have is these areas where the bile ducts are not communicating: you get a narrowing of the duct and with all these scaring areas he points out here is a stricture and here is a stricture and here is a stricture … so you cannot get a stent up there because it’s too small so everything behind a certain place in the stricture cannot drain.
• Drainage is the key. Oh and by the way there is a high stricture up here. Pointing to the different bile ducts that lace the liver. Nothing from here is able to drain.
• What happens is you get what they call lakes or pools of bile ducts that are isolated that do not communicate with the main bile ducts to drain.
• So that is where it becomes futile to put the stents in because the stent is draining here but it’s not draining all the way out in the periphery. This is where you have to say “game up” and the best solution is transplant.
• The other option with all of these bile duct diseases especially PSC is the risk of bile duct cancer called cholangiocarcinoma.
• One of the many dogmas (like an absolute) in medicine is that if you have Sclerosing cholangitis and if someone has it long enough and you live long enough you will get cholangiocarcinoma. You will get bile duct cancer. (He said this is similar to prostate cancer if a man lives long enough and is 93 years old he’s probably going to have a little cancer in there. It doesn’t matter it may not kill you but you’re going to have it there.)
• With these kinds of bile ducts problems he said they are in a sense always on the lookout for strictures and little tumors things like that that can develop in the liver and that would again be an indication for transplant.
• Now, he did say Kevin could clear up from this and do pretty ok.
• I, the mom, asked that obvious question: are you pretty sure this is Sclerosing cholangitis?
• He confirmed yes, based on the imaging, it’s Sclerosing.
• For now: labs every week
• At some point he will make it monthly and save Kevin’s arms
• He wants to see how fast he is coming down: the bilirubin
• Fever, chills, not feeling right call the office or come down
• Who knows he said his bilirubin may be 1.0 in one or two weeks
• We take the stent out, hold our breath, get labs every few weeks, we will see
• Are we good?
• What’s next…watch him…ercp…stent removal… after this we will get another set of plans
• No need to come back until after the ercp
• We were given lab orders for next week. Phong discussed with us after Dr. Galati stepped out what labs she needed. Mostly based on now she is wanting to just look at the liver. But we need to call if he isn’t feeling well or he is having any other symptoms so she can change the order if needed.

March 3, 2016

Dr. Galati’s office called. Kevin’s bilirubin is down! It’s at 2.2. They want to see him tomorrow. I will say I am looking forward to this appointment. And love that they called! You know they knew we were ready for his thoughts on all that’s taken place. Thankful for His caring hand and putting us in the hands of caring doctors.

This Too Shall Pass

March 1, 2016

As we left his lab place up in Tomball the technician who drew his blood who we have chatted with over these years said those exact words as we walked out of the office. “Kevin, this too shall pass.” She had asked him how school was going. We were honest with her because earlier today he officially withdrew from Crown or at least we officially told the Dean of Students that he will not return this semester. We have great peace about this. Kevin needs time to fully recover, heal, and rest. This semester will focus on getting him well. His timing is perfect. He had labs today. His bilirubin is being monitored closely. It was down to 2 ish before the ERCP last Wednesday. We noticed in the ER the night of the ERCP it was back up to a 4.4. Praying it will all settle out now that the stent is in place. We know the stent will have to be removed. I have to wonder out loud what do they do if the stent gets blocked? Kevin wants to know when they remove the stent can they just keep him overnight! I’m for that! And will ask. It couldn’t hurt. He is feeling ok. Staying home and resting. He is having a little pain and is still fatigued. We are hoping to hear good news from the cytology results where they brushed his bile ducts for samples to test. It is a 7-10 business day wait. And I cried leaving Lab Corp because the words were so precious to me from an almost complete stranger: this too shall pass. He has great things for Kevin. The dean spoke highly of him. And I don’t doubt how much he said he is missed. And I also know as our Pastor texted, “…This is all part of Rom. 8:28. We too have peace. When we cannot “track” our Lord, we will “trust” Him.”

5:00 am ER Released

We just got released w script for pain and naseau. Good news it’s not pancreatitis. It’s just pain from the procedure. His bili 4,4. Literally just got in car. Sleep much needed! Walgreens for pain meds comes first though:)

ER 2-25 16 4:00 am

4:00 am

So far they ruled out pancreatitis and the ER doctor thinks it’s pain from the procedure. He has a call into Dr. Nguyen to discuss these findings.

ER 2-24-16 10:00 PM

He’s experiencing pain so the doctor called ahead to have him admitted to the ER. He said he needs hydration and pain meds and he could be experiencing what is a normal but painful complication from the ERCP: pancreatitis.

Feb 24, 2016 Procedure Day

Kevin is in recovery now. Dr. Nguyen spoke to us and explained that indeed it was a longer stricture in the common bile duct. He “brushed” it (got tissue samples for testing) and put in a stent. It’s currently draining and that’s good. They will leave the stent in for 4-8 weeks. It is such a praise to have an answer.

Feb 22, 2016 part two

The ERCP Is this Wednesday Morning

We met with the ERCP Doctor. He and his entire staff are amazing. Dr. Nguyen asked Kevin questions and examined him and then explained very thoroughly what he will be looking for and described how the procedure will go. I cannot express enough how very impressed we were with him and all of his doctors helping us to do the next thing to get answers.

February 22, 2016

Today is a consultation for the ERCP

We will go today just for a physical exam and medical history consult with the doctor who will perform the ERCP on Kevin. We will find out today when they can schedule it.

ERCP February 19, 2016

His MRCP test last Friday did reveal that his bile ducts were changing and it is the beginning of something. Phong said it showed that he had a “mild irregularity of the something hepatic bile duct.” *something being I heard “impa” hepatic. I need to ask. I think she might have said extra hepatic. (Because I googled it after hanging up and couldn’t find an “impa” hepatic bile duct!) Anyway the procedure will be next week. She is hoping they can get him in on Monday. The ERCP will give us more answers. The procedure is an outpatient one. It will look for a number of things:

•they will go in with a scope and take a look around

•they will see the common bile duct

•is there a gallstone that was missed on the HIDA scan

•they can take biopsies and answer does he have a bile duct disease

•the doctor can look and see is it malignant or benign.

•he can see if the bile ducts need cleaning out…if so they place a stent to drain them. He would have to return in 3-4 weeks to have the stent removed

I reminded her he is taking Ursodiol and has been since his GGT was elevated back in the Texas Children’s Hospital days. She said that she was aware and even mentioned to the doctor should they increase it. He said no for now. It thins the bile to help it flow better.

I asked if he needs to continue on the antibiotic. He took the last one last night. I also asked if and when did they want more labs. She will call me back with Dr. G’s answer.

I asked will this procedure give us answers. She said yes. It will give us more clear picture of what it looks like. I asked will Kevin feel better after this procedure. She said he most definitely should and for example if his bile ducts need cleaned out he should feel better in about two days. I reminded her that he is missing school. She said she is constantly reminding Dr. Galati that we have to get this kid back to school!

His Gallbladder is Normal

This evening we heard that his HIDA scan showed a normal functioning gallbladder. So as excited as we were earlier that the test was completed successfully, I think I had a weak moment and cried about this news after hanging up the phone because I just wanted answers. I was really hoping today they would be revealed. More than anything my heart wanted Kevin back to normal. Piggybacking that news is the next step. They will schedule an ERCP. (This was mentioned in last Friday’s talk with Dr. Galati somewhere below the sketch in the posts after or below this one) I have googled it. It’s like an endoscopy but it also allows “other therapeutic interventions” to take place. (My words clean out his bile ducts)

The dean of students has been in constant contact with us. He has been a great encouragement to me and I’ve passed every thing he says along to Kevin. He said he is a great student and has friends there missing him. I know Kevin misses being at Crown. Especially after I asked him who did he want me to get to sit with him while we attended caleigh’s honor banquet tomorrow night! He might have been horrified at this suggestion! Well, he’s not himself. And I hate to leave him home alone! Keith was like: Beth, he drove himself to Knoxville to college. He will be fine. But seriously. He may be 18 but I would be fine getting someone to hang out! Lol! Maybe Cole can do the “online” thing and play some video games and sort of virtually keep an eye on him. What can I say. You come home to mom. You. Get. Mom!

Thursday Feb. 18, 2016

Take Two Took!

Today the technician said he was going to blame me if the tests weren’t clear because that means we didn’t give him enough fat to eat! Keith and I were like but we had a pizza party at midnight with wings! And precious friends brought by cookies (made with REAL butter!)

And we are happy to report that today’s second HIDA scan was clear! The gallbladder could be seen. So they were able to inject the CCK and do that function test to determine if there is a blockage. (My terms) We are waiting on his doctor to hear today’s report. Definitely praising Him for today’s clear images and for yesterday’s lab results that his bilirubin has lowered some. He is still tired and not feeling great. We are ready for some answers:)

I will leave today’s update with a verse a sweet friend at church sent right when we needed to read it: “This poor man cried, and the Lord heard him, and saved him out of all his troubles. The angel of the Lord encampeth round about them that fear him, and delivereth them.” Psalms‬ ‭34:6-7‬

Buy One Get One

When we checked in we were informed that one of the HIDA scans was down and they would be about an hour and a half behind schedule. Once the scan was started it went for at least an hour. He let Keith and I stay in the room too. At some point the technician realized he wasn’t seeing the gallbladder function, so, he called the radiologist to look at the images. They called us in to conference with him and it was decided to redo today’s test Thursday morning. No matter what I know everyone is trying to get answers and for that we are thankful! Kevin was completely wiped out. By the time the test was over and we walked out of there, he had gone almost an entire day without eating plus had a headache on top of all of that.

February 16, 2016

Araceli called from Dr. Galati’s office to schedule Kevin’s HIDA Scan. It is today at 2:00 at Methodist Willowbrook. North Pavilion. She caught him before he ate since fasting before this scan is required. I’m very thankful it is happening today. Praising Him for answered prayers. I know He is in every detail.

February 15, 2016

We waited sooo patiently all day! I even looked at the clock at 4:57 and thought I better call now or never. Instead, they called us…sigh…Phong apologized for the lateness but also said they were deciding what to do next. I’m fine with that. That’s why I didn’t call them–yet!

They want to order a HIDA Scan with CCK. Also, they want more labs to keep an eye on things. They asked how he was feeling hoping the antibiotic helped. But, he is still hurting, tired, and yellow. Even the whites of his eyes are yellow. So we should expect calls in the next couple of days scheduling this. It will be downtown at Methodist.

In the conversation about the MRCP results, they said there was not a dominate stricture and nothing obvious going on. His bile ducts are irregular. (Which Keith says we knew.) She mentioned it could be early signing. But they want to see how the gallbladder is emptying.

So, wait for calls to schedule lab work and the HIDA scan. Continue to pray that the tests would reveal to the doctors what they need to know to get Kevin feeling better, and as they put it back to school!

In my Bible study this week this verse in Romans really spoke to my heart… “And not only so, but we glory in tribulations also: knowing that tribulation worketh patience; And patience, experience; and experience, hope: And hope maketh not ashamed; because the love of God is shed abroad in our hearts by the Holy Ghost which is given unto us.” Romans‬ ‭5:3-5‬ ‭

If there is anyone I know that can stay standing under pressure this kid can! Our Pastor stopped by almost as soon as Kevin got home last week to pray with him and talk to him. He said Kevin is in “Suffering 101” then took it back and said no “Suffering 404!” Exactly! We are trusting Him with Kevin’s complete care.

Kevin at Dr. Galati’s

Dr. Galati – Notes (February 12, 2016)

This entire post written by Keith after listening to the voice recording of today’s visit…hence the bullet points:)

• Pain – Yes, Stomach

• Pain that sent to ER – No, that pain was in the lower left back

• Fever – No

• Itching – No

• Feel same, worse, tired – Tired

• Chill sweats at night – No

• Keep you from keeping up with school, social events, life after class – pretty wasted after school

• Point to spot where belly hurts -?

• Gallbladder still in

• Pain while pressing where gallbladder is?

• How are bowels – Diarrhea

Overview Liver Disease Process (consensus)

• Kevin has Autoimmune hepatitis with an overlap of a bile duct problem

o Sclerosing cholangitis (PSC) – a systematic inflammation, destruction of the bile ducts

o Primary Biliary Cirrhosis (PBC) – a cousin of that

o Autoimmune Cholangiopathy – something similar

• Like Coke, Pepsi, Dr. Pepper lined up … all look similar with different flavors, but all colas

• Difficult to say which one it is, but it is a bile duct problem

• So, it is a tubing issue (drainage) along with the hepatitis part (inflammation of the liver)

• We have been watching the GGT and it has always sort of been elevated [something I could not hear 7:30] – That points towards a bile duct issue (one of the three above – not sure which-it’s a cola)

• So now the bilirubin jumps up … so now it comes down to – Do you have some sort of a blockage that is not allowing the bile to drain out?

o You may have some discomfort – it may be severe or it may be vague

o Sometimes you will have fever and sometimes not

o Sometimes it will mess with your bowels, other times it may not

• So these are very vague sort of complaints … the fact that you don’t have fever doesn’t necessarily make it better or worse, it is just that you don’t have fever which means no infection

• At the same time, we do know that any patient that has a bile duct problem is more prone to gall stones (actual little rocks that will form in your gall bladder)

• You are also at risk for something that we call sludge (sludge is sludge – thick, sticky bile that doesn’t allow for good flow through the liver. Things become obstructed. Sludge leads to sticky bile that can lead to stones or even more fine, almost like gravel, gritty, sandy type stuff)

• It could be:

o Do you have a stone?

o Do you have some sludge?

o Is it actually your gallbladder that is acting up? Is your gallbladder at the point now where it is becoming inflamed due to sludge, stones, obstruction, low grade infection even though there is not any fever?

• Another possibility is when you have this PSC, PBC, Autoimmune Cholangiopathy (whatever it is) … you do develop scaring in the bile duct. Bile ducts are just tubes. [Draws picture] Bile drains through the tubes.

• What we know is that with these different diseases, it causes scaring. Could it be that at this point in the disease, in the timeline, that you have developed strictures (narrowing). So it just got to the point now that it is narrowed, it was inflamed and now it has gotten to where it is not letting the bile flow. Or is there a narrowing a little higher up in the liver where it is not letting the bile down.

• That would be my first suggestion. That there is some sort of a blockage.

• So there are a couple of things that we can do:

o A variation of an MRI called an MRCP – It’s a regular MRI, but the software and the analysis looks just at the bile ducts. It looks at liver, too, but it focusses on the bile ducts to see if there is an area that is constricted.

▪ If the bile gets stagnant and it’s a little more possible to get an infection and that is called cholangitis (inflammation of the bile ducts). So it is not uncommon at any point … now, last year, 5 years from now or later. Can happen anytime. This may be your first episode of jaundice, first episode of cholangitis, maybe an infection that is just brewing below the point that you are going to get a fever and if we don’t do anything next week we are going to get a call that you have a temperature of 102, [Put on antibiotic (Levaquin) just to cover anything that may come and do the MRCP today.]

o Now the follow-up to this is

▪ the MRCP may come back and show this area looks a little narrowed (smoking gun)

▪ Or may come back with nothing

▪ We have a biopsy (gold standard)

o For the first time as a whole we can look at your whole liver and the bile ducts. It’s like a high altitude picture of all of the bile ducts to see if it is favoring autoimmune cholangiopathy, sclerosing cholangitis. It is tough to tell because you are quite young and you may not have developed all of the signs of what it really looks like. Like the full version. You are still in like the beta testing of what it is going to look like.

o If there is a suggestion that there may be an area of narrowing, the next thing we would do is called an ERCP (this is a scope test – that goes down into the first part of the small intestine, very easy to get into. We can put tiny catheters and inject contrast and it gives basically a cast of the inside of the liver. So we can see if there is a narrowing there, or if there is a well-placed stone there that is blocking the road.

o Or is there what we call no dominate stricture (meaning this is the guy that is causing the trouble) than we can then put a balloon in so that we can clean out the sludge, stone or grit. If this is the only issue, we can temporarily put a plastic stint in there to let it drain properly and clean up and heal an infection that is brewing and then remove it 4-6 weeks later take another picture, shoot more contrast pictures and see that it is draining well.

o Another possibility is that there is no dominate stricture and what we see is … things just happen at a certain time for no reason. It is not that you ate too much pizza, it is not that you didn’t do something or didn’t exercise enough. It’s just that we have this biologic clock and it said … Oh the first week in February, he is going to turn jaundice [gave examples of 12 year olds that this is happening to and 85 year olds that have had this for forty years and this is just now happening to them]. We might see in the ERCP that none of the bile ducts are blocked that they are just all kind of on the raggedy side, a little moth eaten, and it’s more a diffused problem and that there is not one single bile duct that you could put a stint in, or stretch, or take a stone out. It is just the whole thing is diffusely diseased. That would render a different discussion, a different plan, a different approach rather than BINGO, this is the guy, let’s just fix that and see what happens.

• Glossed over it earlier, but it could just be his gallbladder (if this is the case…delete all of the conversation above…) Might just be a gallbladder problem that anyone could have that has nothing to do with the liver, bile ducts, etc.

• He does have a Murphy sign (pain when you press on the gallbladder and take a deep breath) it tends to suggest gallbladder unhappiness

• He could be having a little bit of a gallbladder problem because he is not draining properly.

Wednesday February 10, 2016

Kevin called me and we were just catching up when he mentioned some things that got my attention. One, he missed class again yesterday because after he showered he was just so tired. He said he just didn’t have it in him. Two, he also said that over lunch some of his buddies told him he was looking yellow. And after that who is counting. It’s called send your mother a selfie now! Of which I sent to Dr. Galati. Those worlds collided finally. I think even without the selfie I was going to be hearing from them. And we did. I was trying to fit in a barre class to just keep doing something ordinary when I got the call. Araceli (my hero of the day today at the liver specialist of Texas) called and calmly gave me Kevin’s new bilirubin number of 4.8. Of which I just started silently sobbing. She was so calm and caring. She said Dr. Galati wants to see him this week. She set up a Friday morning appointment and sent orders for labs to be done between now and then. Then she mentioned in the same caring voice that Dr. G wanted him around until things were more “steady.” She mentioned some things that autoimmune patients go through that are perfectly normal. So even though we don’t know what is going on at this particular moment we know at least for now His plan is to bring Kevin home. It’s could be days or months. And really none of that matters. So, Keith secured Kevin a flight home. I was in contact with the Crown Dean of students and his RA. Both are completely wonderful and caring. They are personally seeing him to the plane in the morning. Even his roommate heard from me! Kevin didn’t answer for us to tell him all the doctor wanted so I creeped my own vault of pictures from the August drop off to college. I had taken a picture of the names and phone numbers of the room assignments. Well, it came in handy today anyway! Kevin was sleeping off a migraine but after hearing how elevated his bilirubin was and that he wouldn’t answer I just knew I had to find a physical hand to go check on him. Call me hysterical. I will own that!

Monday February 1 to Tuesday February 9

You can imagine I started the day out with a call in to Dr. Galati. They took the message. I then randomly got a call from the ER in Knoxville. So, I love how the Lord works. I could not ask for the records since Kevin is 18. But Dr. Galati’s office can. So I called them again. I did find out through all this and I mentioned it I know to some. If I had asked them to please tweet these records they would have been posted in an instant. And these are critical. Need now. No. Needed yesterday. And it took until Tuesday February 9 to get them. Both me and Abby (my hero at Liver Specialist of Texas) had done our best. She finally messaged us in the patient portal that they had all the ER visit records and were just waiting to consult with the Dr. G.

January 31, 2016 ER In Knoxville, TN

Kevin called me at 1:30 am on his way to the ER. His RA drove him and the dean of students met him there. He was having extreme pain in his lower back center and left side. They ran tests: CT scan, blood work and urinalysis. Pain and IV fluids were given. I prayed all night! He is back in his dorm feeling better as of 5:30 am they think it was a kidney stone, possible UTI, but his spleen is very very very enlarged. He sounded 100% better from the 1:30 am call to the 5:30 one! They gave him a steroid shot and pain pills and want him to check in with his dr here Monday. He missed classes last Wed and Fri but just over what he says was normal stuff getting use to the food again. I’m asking that He reveal whatever this is to the right medical staff and bring Kevin peace and healing.

“Fear them not therefore: for there is nothing covered, that shall not be revealed; and hid, that shall not be known.”

Mat.10:26

“Thus saith the Lord the maker thereof, the Lord that formed it, to establish it; the Lord is his name; Call unto me, and I will answer thee, and shew thee great and mighty things, which thou knowest not.

Behold, I will bring it health and cure, and I will cure them, and will reveal unto them the abundance of peace and truth.”

‭‭Jeremiah‬ ‭33:2-3, 6‬ ‭KJV‬‬

Not to mention I also heard this most beautiful hymn playing in my head and heart all night “I need thee every hour” … Very thankful for the tone of Kevin’s voice from the 1:30 to the 5:30 call. It was a difference in a plane ticket!

“My flesh and my heart faileth: but God is the strength of my heart, and my portion for ever.”

Psalms‬ ‭73:2

January 9, 2016 Brown Spots

We noticed brown spots on Kevin’s stomach and back. He is my smooth skin toned child so after he whirled past me on the hover board classic Kevin style lifting his shirt to reveal his belly button to the world (!) I did a play back. And I know the spots were new! But after thinking it was a sign for something going on his doctor’s office said they were not concerned but to keep an eye on them. But I just want to know where did they come from. Google can’t even give me that. Stink!