Tuesday March 31, 2020 Zoom Chat with Dr. Galati and Katie
Discussed changing our background from our kitchen to someplace fabulous (lol) then labs from Friday at Quest in the Woodlands at Methodist. Sounded like most of them were trending down.
Alk Phos 193 down from 220
BILI 1.2 was 1.1 (he’s not going to have a fit about that)
AST 26 down from 95
ALT 112 down from 256
He recommended to possibly not do the summer camp thing Kevin was applying to do at Lake Texoma and honestly who even knows what the next step is other than dinner tonight. After next labs and zoom chat possible 2 weeks then longer between labs.
He was messaging Dr. Nguyen on how long for the stent to stay placed. Dr. Galati texted this to Kevin after the call ended:
Update, he placed a metal stent, rather than the typical plastic stent, these are more durable and have a longer lifespan so six months seems correct.
Labs on Monday then another follow up Zoom chat later that week.
3/20/20 Kirby ER to 1009 Dunn Tower Houston Methodist Hospital
8:30 am after emailing some one on Kevin’s team late last night these symptoms we went ahead and called Dr. Galati’s office once they opened. Symptoms: yellow eyes in the corners (Caleigh noticed yesterday when they tried to swim) pale colored stool, itchy abdomen. I call it three strikes you’re in.
9:30 am Anthony the NP called us on a conference consult. He asked all the questions. He definitely wants labs but said hold off until he hears from Dr. Galati.
10:00 am ish heard back from Anthony that Dr. Galati wants him to go to the Kirby ER.
All the while copying and keeping his new coordinator in the loop Tasha Murray
Noon: Made it to Kirby ER. They masked Kev up. They didn’t mask me. I’m just a mom. Hoping to get checked and outta here ….
12:20 ER Doctor just did his quick check. He said his eyes look a little jaundiced. Gonna run some tests and call the liver people.
1:30 The ER nurse gave us a quick update. His liver enzymes are elevated. Last labs they see are Jan. I have March 3 ones. (Both were very normal ranges)
BILI was .4 now 5.5
AST was 19 now 134
ALT was 21 now 164
Waiting for the doctor to come back in.
1:50 The ER doctor just came in. He talked to Galati. They are trying to get him admitted to Methodist to see what is going on.
2:45 The ambulance team arrived to take Kevin to HMH. I went ahead and drove my car so it would be at the hospital.
3:00 Its 1009 west Dunn tower. I walked in lobby by where we normally pay for valet and there is a queue. A lady in a helmet mask takes your temp then you step over and get asked the routine questions. They gave me a wrist band and I was good. We are waiting on the PCA to get vitals. Met his nurse Esther.
4:00 nurse Esther and PCA Evelyn checking him all in.
6:00 they took him for an ultrasound
He did get to eat! Ordered himself a heart healthy meal.
7:00 shift change. Nurse is now Diane and PCA is Pacina. They gave all his meds.
Kevin worked on course work most of the night. Pretty uneventful information wise. We did get a pretty happening FaceTime call from Bailey. She showed us her new motorcycle trick. And sang like aerial. And told us how mean Ursula was taking the little mermaids voice.
9:45 He woke up with a migraine. Bummer. The normal migraine medication isn’t in the system. So they can’t give it to him. So we are waiting on the team to round. Earlier the night shift nurse called the doctor. The doctor said we will take care of that when we round. 😭😠😳🤯😱
My frustration with the hospital continues. Love. Hate.
He’s had the headache since early hours of the morning. Night shift is who called. Am shift said she will see what time they might round. 😶
My big brother Steve sends me really encouraging scripture filled texts every day. Just got this one and I cut out most of it but the ending prayer is exactly what I needed:
“Happy Happy Saturday Beth
Good morning Father, thank you for this NEW DAY as we rise please let us be filled with Your spirit. Wherever we go, let us spread love, joy, peace, goodness, and faithfulness.
– Trials Are Part Of Our Development…
In a way, this is what James is describing in James 1:2-4, “Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work so that you may be mature and complete, not lacking anything.”
Dear Lord, You are always giving us the opportunity to face challenges that improve our skills to serve you. Help us see these challenges as the learning and development that they are, and not irritants for us to complain about.
Be good to yourself today Beth”
9:50 I’m listing out the times to keep myself straight. But also it’s such a blessing because before I could finish updating my brother’s prayer a friend texted and said remind them every twenty minutes. I was about to step out to start that “reminding” when Sarah today’s nurse walked in with a paper asking for the specific medications and dosages. Megan who is the NP for the liver team is on for this weekend and our nurse contacted her. Such a praise!
10:30 The nurse gave Fioricet for headache! Did blood cultures. And read us the following labs:
Yesterday’s then today’s
ALT 161 to 193
AST 134 to 154
Total Bili 5.5 to 6.2
Still waiting on Megan who is the NP for the liver team to round.
11:00 Kevin did this update on what the liver team NP said:
Ok. The NP just came in with a rough plan.
Wait on the cultures to see what they say.
Talk to the GI doctor most likely do an ERCP (just another scope to check out the bile ducts)
Depending on all those results maybe do a biopsy of the liver to see if there’s any rejection
Back to me. When she said ERCP we said we were familiar. And mentioned Dr. Dang Nguyen and when she mentioned who was on the floor today for the liver team she said Dr. Saharia and we were happy again because we know him too! And better yet. They KNOW Kevin! She said the ultrasound looked fine. The plan is if the ERCP can be done this weekend they will order it. If not it will be Monday.
So they are looking at several possibilities: blockage, rejection, or recent medication. (Ruling our medication maybe because he’s had good labs since the February pneumonia)
12:00 We finally got to meet Christina who is with Dr. Galati’s Liver Specialist of Texas private practice. She has talked to us over the phone and got Kevin through one of the TN ER trips. She said she spoke with Dr. Galati this morning (my Stitch “bad tank” just went to straight happy! I told Kevin while I’m not mad I’m just wanting people to know we are here. Well. I know they know we are here but I’m experiencing a sense of urgency and it seems like this place is on Saturday slow mode. But now I’m Happy!) [also just coming off Disney world so hence the Stitch reference]
•she said they would like to do the less invasive MRCP imaging today (non fasting)
•they will speak with Dr. Nguyen (ERCP) to see if he agrees
•she said this could be sludge or stones that have built up because liver transplant patients do not have a gall bladder.
She explained it like this. With his Alk Phos (247 yesterday to 261 today) and and liver enzymes elevated she said that equals or points to his bile ducts. Which now that he’s jaundiced even more points to bile ducts. And with no gall bladder your body still can make stones. So an MRCP would show that image. And ERCP will actually be done to go in and clean out the sludge and stones and place a stent. If needed.
12:30 the PCA came in and said they are now monitoring his blood sugar.
2:00 Dr. Rajjman from the gastroenterologist team with Dr. Dang Nguyen stopped in. He told us Dr. Nguyen was his fellow. He said he is the old guy. I’m like. We will take the old guy. Most likely ERCP tomorrow…based on MRI/MRCP findings. He also said alot of other stuff and when I tried to take notes he wouldn’t let me because he said he didn’t want me googling it!
After he left the nurse was in drawing more labs. And Kevin’s phone rang. It was Hoy the NP from the diabetes team. They are giving him a huge dose of steroids and will monitor his blood sugar. Based on his numbers he may it may not need insulin. She said exposure to long term steroid can cause diabetes. They will be checking his levels 4 times a day.
5:00 He’s not eating before his MRCP scheduled for later tonight.
7:25 They took him for his MRI/MRCP
8:00 the nurse doesn’t see Kevin on the schedule. She will confirm with his team if the procedure is today. She will get back with us in an hour. She wants him to eat if he isn’t having it.
There was a bit of confusion and miscommunication this morning. We honestly do not know how they keep it all straight, but are very thankful that no matter what, all the teams are doing what they think is best for Kevin. For now, today looks like it went from fasting and a procedure to being able to eat and the procedure will be tomorrow. So, he will be NPO after midnight tonight.
Kevin and I enjoyed listening to services today on line! Also this computer will not connect to the internet…I asked the nurses. They said the service here can be wonky.
8:30 they came and got Kevin for the ERCP. Once in Jones Tower they prepped him. He signed consents. They had to do a new IV. The other was in his arm from ER. The anesthesiologist prefers a different placement for this procedure. Everyone always comments what a tough guy Kev is.
9:35 They took him back to start the ERCP procedure.
10:15 Met w Dr. Nguyen who gave me the best news! Kevin did great and he was able to place a stent. He said this was very common. He said Kevin looked great! Hadn’t seen him in almost three years. He showed me the print out. (He always shows me this either bedside or waiting room side. Kevin told me yesterday I could stay in the room and didn’t have to go to this procedure. I was like…NO. I mean an xray or ultrasound sure. Go on and have fun. I will stay behind. But for a Dr. Dang Nguyen ERCP…he always gives a quick talk. He’s the best! Kevin is out during this too so what does he even know) And he showed me on the print out exactly where the old duct was connected to the new duct where the narrowing was and where he placed a stent. Very flexible covered stent… He explained that this will stay in place for 6 months and 85% of cases will not need another procedure once the stent is removed. There is a risk that it migrates or forms stones or even food can get in there…but between now and then if jaundice or fever that would be the sign to check back in. The doctor said he really needed this procedure and that the MRCP really showed that stricture.
10:30 pain med. Kev is very uncomfortable in recovery. gave second dose a bit later
10:52 gave delodid for pain. He was at a 7 before. Then it stayed same after two doses.
12:25 nurses on floor gave tramadol. He’s still at a7 We are back on the floor. yikes
1:30 Xray came to the room. He’s been resting before and after finally. This did turn out fine. All looked good placement wise and all according to this.
Pain still same at 1:50. Next available is at 6:20 😱
4:55 thankfully they were able to bring another type of pain relief for Kevin before 6:20. Someone’s praying. Poor guy. His pain level has been at a 7 basically all day.
7:00 This has been a rough day. All I can say is people started out the day saying what a tough kid Kev is and I’m echoing it as his mom hours later saying I don’t know how he stands it. I know it will only get better with time and rest but goodness…this one was tough. I told friends that I did keep my mouth closed but in the recovery after loads and loads of IV pain med was given I was ready to ask what is wrong with his IV and where do you think all that med is going cause he isn’t feeling it so it must be just connected wrong. Glad I didn’t say anything but goodness…poor Kev. I treated myself for suffering so by ordering my first uber eats to the front of the hospital from Zoe’s kitchen. Kevin hates hummus and cauliflower rice and since I’d consumed that last of the snacks in my back pack from Disney I had for line distractions for the girls…I needed real food. Now had I ordered Papasitos Fajitas that would just be mean…
He is still in some pain. All day yesterday he was at a 7 even though the faces I saw I would put it as a 10. But today he’s a 6 to 5. So we will take it.
8:30 Dr. Dang Nguyen was in. He talked to us for a while. He performed the procedure yesterday. He explained that in young patients it is more painful. He said even during the procedure when he’s opening the duct and stretching it they jump or move at that time. So he said it is like a stretching that eventually he will get use to. He said again how good it was to see Kevin doing so well. He told us a story of his youngest patient getting transplanted at 17 and is now graduating from college and somewhere in there he mentioned he’s been seeing him since he was little. He treats him for colitis. We threw in that Kevin has been recently diagnosed with that! He said normally in patients with PSC colitis goes hand in hand. Usually it’s found before PSC. I told him Dr. Galati said the exact same thing! We told him the Med they started Kevin on and how long he dealt with “stomach issues” and he said it’s normal. It takes a while to determine and that medication is the first level. He also put his hand out and was like he may know 5 people ever that are this young that has the things Kevin is dealing with. He also commented on how good Kevin’s labs look. He said normally after a procedure they bump up from the contrast in there. So. He’s happy with Kevin’s outcome. Wants him to move to a Full liquid to soft diet.
9:45 Pain level is at a 2! The soft breakfast arrived
Between 10 and 11:30 the transplant team and the galati team came by. We didn’t know either of the transplant team members but it was good to meet them since they all help make decisions on Kevin. They did switch him to cellcept from zortress out of an abundance of caution temporarily because a procedure was done. Just like they did when he had his appendectomy. (As I am typing this the pharmacy hopped in with a refill of it from walgreens! They said it was a zero copay and knew we were concerned about our mail order for the antirejection meds getting him some for when he is discharged…so that’s taken care of! And he gets a break from peeling his zortress every day twice a day and Keith says he gets a break from picking up all those peelings! Lol
They ordered a few more blood tests to rule out any causes for pain other than procedure. Christiana from Galati’s team gave us good information too. She said the xray showed no perforation or puncture and that the stent was in place. His alk Phos and Bili are down but the AST and the ALT are still up. She said this could be normal after a procedure with the liver…
Overall they agreed to do what Kevin felt best on discharging today or tomorrow. Since he is still in pain, it is lower and since they want to see those other liver numbers once more it looks like discharge day is tomorrow. Pending any sudden changes.
Asking myself now why did I write: pending any sudden changes? Last night starting around 10 pm Kevin started hurting. He had just had his pain meds at 9 and just prior to this he had to ask for the other pain med to try to make it to the one that works and migraine med. He was in a heaping mess. Somewhere around 10 I stepped out to the nurse. She said let’s give it time. I stepped out again and she called Dr. Nguyen’s office. She said the lady doctor on call for that team said she didn’t know Kevin and that she wasn’t comfortable giving anything else. Meanwhile poor Kevin was hurting. I massaged and rubbed his head and back…prayed and read scripture aloud. All the while the nurse brought in a heating pad. Just crazy stuff here. I think the station called her back maybe she didn’t put in an order. She was struggling to put it together anyway. This is not your normal heating pad. It looks like it requires NASA astronaut training to even plug up! While she was gone doing all that Kevin wasn’t any better and his pain was to a 9. Worse than after the procedure. I’m thinking something else is going on!?!? No one is in the halls. Finally, our PCA stepped in the hall and I said can you please call the lady doctor back and make her call the doctor who knows Kevin! The nurse found us and she said she had a call into the transplant team. I said we just met them today and honestly, I don’t know them and they don’t know us. I asked her if they were young and new? None of it mattered because by 11:30 they approved a shot of delaudid (correct spelling. Finally looked it up. I’ve been spelling it dilodded…the dictionary doesn’t know either so who cares!) By 1 am he was waking me again to help with his head. At 3 the same. Finally, we must have both fallen back asleep. At one point I took a picture of the light above his door. It was red the entire time. Shows how much that system works. They were in and out helping but never touched that light box on the wall behind the door to change it. Good enough too cause it was a RED LIGHT NIGHT. Awful.
Our nurse was a trooper! I don’t want to slant in my observation of Kevin’s pain that she wasn’t doing anything. Once he finally settled and slept after the pain dose to the IV I was sitting in the chair and just couldn’t hold it in anymore. Watching Kevin silently and sometimes not so silently suffer and being able to do nothing just takes it out of you. I was silently crying and she came over and threw her gloves away and hugged me. I’m not even the one who needs the hug but I took it for Kevin…
It’s 8:30 now and who knows. He’s feeling a little better. Resting. Ordered breakfast cause they knock on that door to get that order not knowing how your night was.
8:45 Dr. Nguyen was in. We told him about the horrible night. He did say the transplant team always manages the pain meds. And he is starting him on an anti-spasmodic. He examined him and pressed around the abdomen. He said it’s soft and no way would Kevin allow or tolerate that pressing if there was something wrong. He said it does take time. I asked should we have stayed on a clear diet he said no…
9:00 He is still at a 5-6 and cannot have norco until noon. Nurse gave normal meds and tramadol because maybe it will help some.
9:50 Just gave him Bentyl (or dicyclomine) it’s the antispasmodic dr Nguyen ordered after seeing Kevin this morning and hearing about the bad painful night. The nurse said let her know if his pain worsens.
10:00 The endo np or doctor called kevin on his cell…social distancing at it’s best…she’s concerned about his levels. We talked through all that has happened and she said she would look at it again tomorrow before adding something to take short term. She said the pain could play a role in it.
10:45 Megan the NP from the Transplant team said he’s going home. Horror face from us only because of the horrible night. But, she said she doesn’t want him here in all the corona craze (my phrase) just to get pain meds every 6 hours. Got it. She’s trying him on a Tylenol 3 and seeing how that works and will send him home with whichever works best for him. Labs Friday. Taper the prednisone orders will be in discharge papers. He’s always at 5 mg but they increased it for this stay along with that heavy IV dose Saturday. He will be tapered back to normal soon. She is going to talk to the endo lady and let her know it was most likely because of the increased steroid that his blood sugar levels were increased as well. The cellcept antireject med will also come from Tasha his coordinator as to know when to switch back. Aslo labs again April 6.
If he needs to be seen for pain or whatever to call first. Call. They will telemed or conference call. No just showing up at our beloved Kirby ER we learned way back in the day from Jane (our first and most beloved transplant coordinator!)
11:00 Christian Galati NP came in next. She is going to talk to the above too because Kevin has not felt like eating this morning. She doesn’t want him going home and vomiting anything he eats. He wants him to eat and ordered those good old “boost” shakes. If it’s what I’m thinking after trying one they just kept stacking up in the corner of the room until discharge… She is fine with labs Friday and a telemed call next week. All his liver numbers look good and are down. I asked even ALT and AST because those were the final hold outs! She said yes…even those. That’s good. She listened to him too. Said his color looks back to normal almost no yellow in the eyes. If we get to go home today it will be later…
11:30 Abby our nurse just gave him Tylenol 3. She wants to know in an hour what his pain level is. He’s a 5 right now. She wants to figure out which one helps him to be more comfortable. She also said Luze the endo lady wants to send him home with a sliding kit…(?) insulin stuff. I said did she hear from transplant because they didn’t seem to be worried at all about this. She is going to check. Before she educates Kevin on it she said they at least need to see if they are all on the same page. Agreed.
1:30 The Tylenol 3 worked. He ate lunch. The pharmacist stopped by with updated med list. We are getting discharged today!
Dr. Galati 3:30 March 2, 2020
Dr. Galati wanted to see Kevin. We flew him home for this quick visit. Funny thing. Kevin was the one talking to him. He said the doctor said to call his office and get them to schedule you Monday afternoon. When i asked Kevin what time Monday on Friday night once we picked him up from the airport he said… oh. I forgot. We were suppose to call. K. E. V. I. N. !!! That makes me the bad guy Monday morning when I call to ask what time. 😬 It all worked out but no one knows Kevin there anymore. But they do now. 😂
•Dr. Galati wants drug level labs Tuesday morning for Antirejection medication.
Wild card how you feeling
Could have been antibiotics
Keep gloves on! Try not to touch surfaces
Labs in the am
(Seat guru for airline tickets)
BVI in May bring a basin and three sets of medications 😂
2/26/20 Kevin Called 1:00 am Wednesday
Sharp pain in my the left side of my back and real bad discomfort in my abdomen
(He finished his two antibiotics yesterday from last weeks stay of pneumonia Levoquin
We called OPC for on call transplant coordinator. Was on hold. So we called Texas Liver Specialist after hours. Left a message.
1:30 His RA Phillip is driving him to the ER
4:20 Well you know my luck. A code happened shortly after I got here and the dr checked me out. So I just now got something for pain.
4:45 I just had a cat scan. And they did an X-ray and they said the pneumonia looks cleared up
5:00 My white blood cells are up to 11 something right now (all last time they were 6 then low of 3s)
6:45 Kristina NP from Texas Liver Specialist Dr. Galati’s office called. She’s going to speak to the team this morning. Dr. Galati was already wanting to see Kevin in March from the colitis diagnosis so I asked her to try to find out what that appointment needs to be. Just an exam or another scope.
9:00 Dr. Galati called. He wants one of us to text him tomorrow at 11:30 with a Kevin status update. Wake up. Eat. Start your day. If your in cloud nine he wants to know. If you feel like crap. He wants to know. He did say that antibiotic would give anyone colitis!
We discussed dates to see him. He’s still in the decision making about colitis. He may kick Kevin upstairs to the colitis expert.
10:00 am Email from Tamieka
The Transplant Emergency Line is still 713-441-5451, my apologies if you didn’t receive a return call. In addition, it is common for Antibiotics to cause GI Upset, as it kills ” Good Bacteria” in the gut in addition to the bad bacteria causing the infection. He can add a Probiotic to help restore Homeostasis & reduce Abdominal discomfort or Diarrhea. I will refer you to Tasha for any further intervention as needed. Glad to hear he is feeling better, make sure he is taking a stool softener with the Oxy to prevent constipation & he needs to start weaning himself off after 72hrs because those pills are highly addictive.
2/16/20- 2/19/20 Tenova Hospital Stay Powell TN
Kevin was admitted to Tenova Hospital in Powell TN Sunday Feb 16, 2020
Discharged Wed February 19, 2020
He went to CVS minute clinic w fever of 101.3 and they sent him over to the ER. They did a chest x ray and a CT scan and are treating him with antibiotics for possible pneumonia. They also started Tamiflu on him because they just cannot find the cause of the fever. In an abundance of caution as a liver transplant patient they spoke with his Houston doctor twice today and decided to keep him overnight for observation as well as discussed the best treatment plan.
Keith, Caleigh and I were already here for the long weekend for my uncle’s funeral, but after spending the day at the hospital with Kevin —it is clear that he is surrounded by the most caring people at Crown College. We praise Him for each staff member and friend that stopped by to pray over him today.
Please pray that the team here will find the most effective treatment plan for Kevin and that he would heal quickly, and for us as we fly back Monday night to Houston.
Monday 17th :
We are leaving for the airport. They just got him moved up to a room on the floor. Been in the ER room since yesterday morning. Pretty. Scary. Curtain for door. Germs everywhere. Shared bathroom. BEST NURSE THIS MORNING. She said. I’m calling Pam. Her floor supervisor. Got him moved. It’s ALWAYS the nurses. 💚 I’m a crying mess. But Melissa is gonna check on him after she gets off work and tomorrow. Not to mention all the floods of Crown people who hop in. The floor people are fabulous. He has dinner and breakfast ordered. Getting IV meds and Much Much needed rest.
Me Keith and Caleigh attended chapel this morning. Caleigh toured the school after. We are praying for His will for her college choice.
Tuesday 18th: Dr. Korey the ER doctor called me all the time. He was the best. He’d talk to Dr. Galati, then Kevin then me. He made sure I was in the loop and stepped us through exactly what he was doing. Melissa was able to get away and stay with Kevin.
Wednesday 19th: Kevin was discharged and given a note to recover in his dorm for 5 days. He drove himself there so he drove himself back to the dorm.
February 3, 2020 Dr. Galati phone call: It’s Not GVHD
Dr. Galati just called. He said straight up it’s Colitis. He said we’ve been waiting for this shoe to drop. It’s a pretty good case of colitis. He wants to see Kevin late March and wants me to text him some loose dates that he would be available. Maybe soon a limited colonoscopy or a sigmoidoscopy. He also wants to get a feel for Kevin’s weight. He mentioned all along he was thinking it was PSC w Colitis. While this didn’t come out of the blue he has been dealing with this for a while now. Actually since about March of 2019. This has been PRESSING. That’s all I can say. While it’s difficult to say we are so thankful it’s colitis … we are because it’s not the GVHD (Graft Versus Host Disease) crazy out there aggressive rejection. We are praising Him for answered prayers! So far we have texted him that Kevin’s best dates are Mondays so either March 23 or 30. Waiting to hear back from him plus we probably need to ask what kind of appointment.
January 22, 2020 Update from Dr. Le
Good news for Kevin from Dr. Le! They just called! She showed the ultrasound images to Dr. Sternbergh of New Orleans and he agrees with her that nothing needs to be done. Follow up in one year again for ultrasound. Call two months before especially if United Health is still at odds with Methodist. (They were on my list to check today too!)
January 20-21, 2020
The saga of the slides. You really never want to hear your doctor’s office say “I didn’t know about the slides” when for twenty plus days we thought said slides were being looked at for a second opinion. Somehow things slipped. I questioned had I not called to check when would they have ever known to do it!?! I told Keith the doctor’s office needs a whack a mole type system. The patients need to pop up so the “staff” can remember to follow up with what they told them they would do. It was like news to them! Well. I’m sorry. But you tell me there’s a random weird chance that Kevin could be in a weird form of aggressive rejection and you are sending biopsy slides to get another opinion then get it done! Or at least act like you knew! The office called back three times one day and I could not hear the connection. So I called them back. I repeatedly tried all day. Leaving voice messages to anyone they transferred me to. Finally sent an email to Marie. She called bright and early the next morning only to let me know nothing has happened and it was her trying to reach me yesterday. I said we have other ways to be reached. Home phone. Email. I can’t even put into words the amount of frustration this brought me. As my family would say: she’s an angry elf. Efficiency. I’m thinking it’s not too much to ask. Just present efficiency and this mole will be whacked right back down. The different people I spoke to treated me like I use to treat people when I worked retail and they came to check on their order. “It’s in the finishing process.” Only, this isn’t retail! And I wasn’t buying it. One lady commented so vaguely: well I’m sure they were calling about the medication. I said that was three weeks ago. What would they need to tell us!? And another commented it looks like the form was sent to whomever it was being sent to so we will know something soon. I said. Ummm. I’m gonna need more details than that. Dr. Galati himself gave us more specifics than that. He was wanting to send them to HMH MDA… so which place has them?
January 9, 2020
Kevin heads back to Crown for Spring semester! For the record this will actually be his very first Spring Semester at Crown. His Freshman year he came home in February with liver failure and then after transplant he spent that first Spring semester abroad—at Crown Hall in England.
January 8, 2020 medication update
Kevin’s new medication is called Sulfasalazine 500 mg tablet. He takes 1 tablet 4 times a day. Start day is today. CVS gave him a 90 day supply. He had one week of Asacol or generic Mesalamine 800 mg tablet he took 1 tablet 3 times a day until we could get the insurance to approve an acceptable one for the new diagnosis of colitis.
January 8, 2020 Dr. Le phone call
Dr. Le called tonight. It’s incredible that she called us at home so late to tell us that she looked at the ct scan images and she doesn’t think he needs a procedure. It was not occluded. It was patent. She reminded us that Kevin is her only hepatic stent and that HMH in Houston doesn’t do many of those. He’s her only one. Ochsner does way more liver transplants and she saw them more frequently when she was there. She’s seeing Kevin’s NOLA doctor tomorrow and will hand him off the images. She said he never forgets a patient. He’s going to most likely get back to us next week after their conference they are at together. But for now it’s looking like hepatic stent wise. He’s good. Our insurance is extended officially until April so if he needs one it can be here in Houston or Nola. Such a praise for now! Kevin said welp. We just have really good doctors. Amen!
Jan 3, 2020 I sent this email to our Houston Methodist Hospital (HMH) Coordinator Tamieka
Kevin update about recent colonoscopy showing some form of colitis plus a crazy Graft Versus Host Disease and yesterday’s ultrasound at cardiology showing possible stenosis. (And a scar pic. Always a pic!)
•he had a colonoscopy Dec. 17, 2019, by Dr. Galati’s private office. Bedside Dr. Galati said it looks like it’s under the colitis umbrella. Path results this week confirmed just that plus a crazy way out there possibility (😱) Dr. Galati called us. Kevin and I were both able to listen and ask questions. Love that doctor! He said it’s definitely colitis and called in a medication for that. (Insurance doesn’t cover it so we bought a week’s worth to get through the new year holiday this week and to touch base w correct people)
Who do we get this medication from now? His office. You Tamieka? First set came from his office so them?
•the other way out there possibility he worded it like this. The pathologist asked him if there was a chance this kid could have Graft Versus Host Disease? Dr. G asked if we had heard of that. We replied we don’t even know what you are saying. (I’m sure if I dug out the two transplant notebooks it might be in there?) anyway. I love his response. He told the pathologist thank you very much but I’m a logical guy. You can’t go giving this kid two diseases. He said we are not giving him the disease of the week. (Lol) But since it’s in the report he’s going ahead and sending it over to HMH pathology and MD Anderson and maybe one other for their opinions. Dr. G said it’s going to be a wait and see kind of thing. IF the colitis medication works then we have our answer. He has been having diarrhea since March of 2019. We have done all the things to keep from scoping but even this summer Dr. G said he needed a scope. This was just first available time and I’m kicking myself for not getting it done sooner. Kevin never tells us all the things. He’s even been waking at night with symptoms. I’m like. Kevin! That’s information we needed to know months ago…
•yesterday’s ultrasound at Dr. Linda Le (Lay) office in Smith tower. She saw possible stenosis. She wants a CT scan today to decide if a procedure needs to be done. She trained under Dr. Sternbergh at Oschner who placed this hepatic stent 6 weeks after transplant. After we saw him for a follow up he told us we could use her since she’s closer than New Orleans. Now thanks to Methodist and United Health Care our insurance Dr. Le said she would not let us pay out of pocket like we were willing to. She found a place near us called Herman Imaging and we are scheduled for 2:00 today for a CT scan. Kevin will then drive the images to her office because she is seeing Dr. Sternburgh next week at a conference. IF he needs a procedure to clean out or replace it Oschner is in network and it’s half way to his school in Knoxville so that was her plan.
•Dr. Galati and y’all i don’t think know this last ultrasound information. How do we relay it to him? Through y’all? We did fill out the transplant extension. We don’t know if it’s approved. I know it’s a lot of information. And I know as of two days ago y’all aren’t even in our plan. (All the tears. All. Of them!) But Dr. Galati said we would cobble something together. Lol. His private office is in our plan. Dr. Le is through April. I’m sire y’all are getting this exact situation times a thousand!
January 3, 2020 Imaging at Memorial Herman because fight between HMH and UHC insurance
Kevin’s CT scan at Memorial Herman Imaging center based on yesterday’s ultrasound report of possible stenosis in his hepatic artery. Bonus. This facility is 11 minutes from our house. What!?! Not an hour and a half in traffic!?! Kevin is leaving from here probably first for food then second to Smith Tower! Finally he gets to drive through all that traffic while I finish my day in the spring area running errands. He plans to stop at TIFF’s treats and grab some cookies for Main 7 HMH. I Love that it was his idea. He loves those people on that floor! It’s Friday so hopefully we will know something by Monday. I’ve lined up dental and vision and trying for chiropractic next (anything to try to help w migraine) The eye exam is due to crazy glasses mix up. He wore new script glasses all semester. We had to mail them to him. But they caused him to see multiple lights in classes and church and while driving at night he would see multiple cars headed towards him! Crazy! This is information we need to know! He goes back to school next week so most of this will not be resolved before he leaves but it will all work out.
January 3, 2020 Kevin’s Yearly Ultrasound to Check his Hepatic Stent With Dr. Le
6 weeks after transplant the flow between arteries wasn’t good enough so Ochsner had us see their cardiologist Dr. Sternbergh and he placed a stent. We followed up with him for the first 6 month check up but he recommended Dr. Linda Le (pronounced Lay) in the medical center in Texas Smith Tower. So we’ve been seeing her now. This is the second time. Last year was smooth sailing. All looked fine. This one however she said there looks like a possible stenosis. Blockage. Because she is covered until April with our insurance, we were fine seeing her. But since she saw what looked like a blockage, she didn’t want to do the CT scan there because it isn’t covered. We tried to do the out of pocket thing. I was like thinking to myself we can max that out right here and now and stick it to United Health the rest of the year. But she wouldn’t let us. So she had to have her people find an imaging place for us to schedule a CT scan. The plan is to get the CT scan. Get the images to her ASAP. She sees Dr. Sternbergh next week at a conference. IF A PROCEDURE is needed to clean out the stent it would have to be where our insurance covers it and since she cannot do it, she’s sending us or wants to send us back to Ochsner. It’s kind of on the way to Crown. Who knows if all this will get resolved before he has to be back at school by Jan 10. Oh. Wait. I do know. He. Knows. He is with us. Ever since the phone call about the aggressive rejection disease that one pathologist saw might look like GVHD I was just already doing my normal Sunday School prep now that it’s my turn again. We left off praising Him through the Bible in Haggai. And sure enough when I circled praises for Him back in the day in that short book twice I praised Him for being with us. I use this analogy. So many times we have been close to the edge of the cliff. Just ready to tumble off. But then the tests or opinions will change and it will all be a non event. While we’ve seen many cliffs we cannot tumble down without landing on His strong and mighty hands. And one sweet friend of Kevin’s we met along they way sent us by means of a thank you a hand lettered framed picture of Kevin’s bracelet verse. Isaiah 40:31. It was the very day we got the call later about his crazy scopes report. Caleigh was with me when I opened it and I had tears. I don’t even know if she knew it was his bracelet verse. Just such a vivid whisper that He. Is. With. Us!!!
Kevin’s Bracelet Verse Hand Lettered by Emily