The past several weeks Bailey’s labs have shown the liver enzymes trending up (AST/ALT and GGT). She has been off of Prograf since the beginning of November to help her own body’s immune system fight off the Ebstein Barr Virus that it got from her donor liver. But the EBV is being stubborn and keeps going up and down, despite being off the immunosuppression completely! EBV can lead to PTLD (a form of lymphoma- cancer). So we’ve been walking a very thin line trying to keep the EBV under control so she doesn’t get PTLD, but at the same time not wanting to upset her new liver. This means having to get labs weekly, to monitor for rejection which is seen only in elevation of liver enzymes. There are no symptoms of rejection until it’s too late and it’s just full blown liver failure.
A liver biopsy can show one of 3 things for why the numbers are elevated:
- Effects of a drug
Bailey isn’t on any drugs that are toxic to the liver, or that they typically see liver enzymes increase with. She isn’t showing any symptoms of a viral infection. So I’m leaning towards rejection- especially since she’s been off Prograf for 3 months.
Bailey just turned 2 at the end of January and is 7.5 months post transplant (June 2018).
Wednesday, February 6, 2019
We checked in at IR at 6:00 am for her liver biopsy. It was perfect- first case! She didn’t even have time to realize she had been NPO since midnight. Dr. Kukreja performed her liver biopsy and mentioned something scary afterwards- he said her liver was pretty scarred where he went in with the needle the first 2 times and it bent the needle it was so scarred! I freaked out a little- he said it was to be expected because he might have gone in right where they stitched the donor liver into her body and it would make sense for scar tissue to be there. So I’ll make sure to ask the liver team later what this means- and make sure it’s not her entire liver that’s cirrhosed.
When she woke up after her procedure she was in a lot of pain. 2 doses of morphine helped her fall asleep finally.
We made it up to the pulmonary floor (14th floor) by 4 pm. There weren’t any beds on 12. I’m just glad we’re not in Abercrombie!
Night 1 away from home was the worst night I’ve ever experienced with Bailey. It was worse than the first night of sleep training. She screamed and screamed and screamed and screamed. It had to have been 4 hours straight. I could NOT console her. YouTube, Moana, Frozen, Trolls, puzzles, coloring, baby dolls, Mac and cheese, animal crackers. Literally nothing could console her. We tried everything. Finally the nurse tried PO Tylenol, which did nothing. Then finally got an order for morphine and she finally stopped screaming and fell asleep an hour or two later.
Since we just moved her to a twin bed in her toddler room, we decided to get her a big girl hospital bed instead of a crib. She loves it!
She slept okay. I think it was a mixture of being away from home, having had a painful procedure done earlier, and being SO beyond exhausted. I slept with her until midnight, when I woke up to pump and she slept by herself until 4 am and she was awake ever since ready to go out in the hall in her wagon 😂
Thursday, February 7, 2019
The team rounded at 10:15 and said the results wouldn’t be back until 1 pm and they’ll have their liver meeting at 1 and then come talk to us about the results and the plan.
We have an awesome child life specialist on the floor, Morgan, who has brought us so many toys for Bailey to play with. I’m still pumping every 3 hours in the day (I went 4 last night for my own sanity).
Bailey is FINALLY taking a nap on Mimi! 11:00 am. Poor thing is EXHAUSTED. But she is definitely acting more like herself today!
Will update again once I know the results.
I just got home from the hospital. My mom is gonna stay with Bailey tonight. I am SO exhausted. I know this isn’t about me in any way shape or form, and poor Bailey has already been through so much and has to go through so much more. I didn’t get great sleep last night and the night before I only slept like 2-3 hours in between packing for 5 days and feeding Emma. looking forward to sleep in my own bed tonight ♥️ THANK YOU MOM.
Dr. Himes confirmed it is moderate rejection. The rejection on 4th of July was “moderate to severe” rejection. So at least it’s a little lower if we’re ranking it. They’re not sure how to treat it yet though. Because of the EBV, we’re gonna get the oncology team involved and make sure everyone is on board with the plan of IV steroids. I was holding Emma when Dr. Himes walked in to give us the results. He knows I’m back at work and that I’m clearly trying to juggle a lot- including a newborn’s feeding schedule and now a toddler in the hospital again and said he’d make sure a decision was reached soon and not “sat on all weekend”. He also mentioned possibly starting rituximab to help the EBV if it gets too high while on steroids.
Baikey also got an echo today. Before her transplant, for evaluation they had to do an echo, and it showed some kind of trebeculations and left ventricular hypertrophy. So we are just following up. They said they see this commonly in Biliary Atresia and it usually self resolves. THANK YOU Mimi for taking her so I could stay and listen out for the team to come by with the results … of course Bailey had been gone to her echo for not even 10 minutes when Dr. Himes came in to tell us the results of the biopsy! I had originally gotten a call to schedule a cardiology appointment… and since we are inpatient this week I asked if they could come to us! They did 🙂 the results showed the same trebeculations… they put her on a holter for 24 hours and we will follow up outpatient in 6 months (August).
1900 Update: we are starting IV steroids tonight! And will taper the dose over 5 days, then continue to taper from home on a PO dose. They also put in for us to move from 14 pulmonary to 12 West Tower 🙂 back to our home floor! So whenever a room opens up we are moving rooms! Which will be nice because our current room only has an accordion wall and we can hear EVERYTHING next door, who also has a very fussy kid.
Driving home tonight, this song by Matthew West came on the radio and I broke down in tears. I’m copy pasting the lyrics here:
You must think I’m strong
To give me what I’m going through
Well, forgive me
Forgive me if I’m wrong
But this looks like more than I can do
On my own
I know I’m not strong enough to be
Everything that I’m supposed to be
I give up
I’m not strong enough
Hands of mercy won’t you cover me
Lord right now I’m asking you to be
For the both of us
Friday, February 8, 2019
Sorry for the late update! It was either update my blog, or get good sleep for work the next day… I chose sleep 🙂
Tonight, we restarted Prograf at 0.2 mL (that’s 0.1 mg).
Emma is staying with my parents, and Grant and I have Bailey at the hospital. I’m going to work in the morning and I already have mixed feelings about it.
Mimi came over to our house to watch Emma first thing in the morning so I could go up and be with Bailey. My brother, Cole came in town and brought my mom and I lunch (our new fave from Zoe’s – cauliflower rice chicken!!).
Bailey didn’t start raging until about 11 am this morning when we were playing play doh. The steroids make her all kinds of moody… on top of being a toddler, on top of being in the hospital in a tiny room, with strangers coming in and out in those stupid blue gowns (they found her VRE in her chart 🙄 lol every time!). Overall though, she had a good day and is not in pain requiring morphine. Could she use some Ativan ? We all could! But unfortunately that does not come standard with steroid orders. We will just have to power through and beg for Tylenol if it gets unbearable.
Grant came straight to the hospital after he got off work.
Saturday, February 9, 2019
I ended up going to work today. I went to visit Bai during breakfast and walked into her screaming while 2 PCA’s and a nurse were trying to get enough blood from a finger stick for her labs. They ended up having to poke her twice and stick her once for a venous draw. Awful. I hate labs without Omar! 😭
Speaking of, he stopped by yesterday to check on Bailey and give her some pink bandage wrap ♥️ He. Is. The. Best.
We are increasing Prograf to 0.4 mL (that’s 0.2 mg). Really trying not to freak out about the EBV rising like I know it is…
Yesterday one of the fellows for Dr. McClain with oncology came by and explained everything in really good detail. He said we will not be starting rituximab unless she gets an official PTLD diagnosis. They don’t just start that prophylactically in cases like this. He said they fully expect the EBV to rise and go up and down. But they are not concerned until she starts having symptoms such as: fever, vomiting, excessively swollen lymph nodes, I explained rash etc. Anything out of the ordinary. If she does, then we will have to get another PET scan. He showed me Bailey’s PET scan from October and further explained the areas that lit up- the PET scan uses a contrast dye that’s injected into Bailey’s body that binds with glucose and in return “lights up” areas in the body full of glucose. Which is why she had to be NPO for like 8 hours before this scan and could only have fluids going that didn’t have dextrose in them. Anyways, the areas that were super dark in the scan were the brain, which uses most of our glucose, and the bladder, which is to be expected. Those 2 were super black on the scan. The spleen was a dark gray color- I asked what that meant. Well, when the scan was done Bailey was running a fever and was battling some virus at the time (we thought it was PTLD – hence the scan). So the spleen was working hard to fight that infection. It was a gray color and that didn’t totally rule out PTLD, but with her viral symptoms it did confirm a virus.
Tonight, Emma is with Grant’s parents. Grant is with Bailey at the hospital, and I get to be home by myself to rest up for what this week holds. What is rest when you still pump every 3-4 hours though ?
I’m missing Emma so much! This is the longest I’ve ever been apart from her. And this past week was the first time being away from her overnight.
This hospital stay I’m learning it’s okay to let go every now and then… I can’t be everywhere at once, as much as I want to be. I miss our normal life. Hopefully we get back to normalcy by Wednesday!
Sunday, February, 10, 2019
Grant stayed with Bailey overnight. I came up around 1 pm.
Doctors rounded. No changes. Just stay the course with the IV steroid weaning and monitoring labs.
They drew an EBV level today. Hopefully it’ll be back tomorrow.
Tonight Mimi is staying with Bailey and I get to actually breastfeed Emma instead of pump!
Monday, February 11, 2019
I dropped off Emma bright and early to my mom and got to the hospital just in time for rounds. I’ll stay tonight with her and then we’ll play it by ear from there whether she goes home tomorrow or not.
Dr. Hertel is on today covering for Dr. Leung. She said the EBV is 15,000. So yes it is higher but we expect it to go up being back on steroids and Prograf. Still no symptoms so they’re increasing Prograf to 0.3 mg (that’s 0.6 mL) and that’s the dose we will go home on.
Discharge depends on if Dr. Leung feels comfortable with the labs trending down and not getting a set of labs inpatient on the PO dose of steroids.
She will get a dose at 9 pm tonight and 9 am tomorrow and that will be the last one! from there we will do PO prednisolone at 9 am and 9 pm.
Tuesday, February 12, 2019
LAST DAY OF IV STEROIDS! Somehow by the Grace of God alone Bailey managed to keep her SAME IV in her right hand this entire hospital stay.
Dr. Leung feels comfortable sending Bailey home today! They just need cardiology to sign off on her since we did the echo and holter hook up during this stay. And tell us when to follow up outpatient.
Note to self: next time we are here and trying to be discharged make sure the resident knows we don’t need all new orders for her prescriptions. This happens every. Single. Time. Whatever they see and do on their end of discharge sends ALL of Bai’s prescriptions to the pharmacies and I get calls over the next few days saying how those meds aren’t due for refill.
Being up here yesterday and today just me and Bailey has been so nice. Don’t get me wrong, we are BEYOND thankful for all the help. But ever since Emma got here, Bailey has kind of had to take a backseat. But these last few days it was whatever Bai wanted to do whenever Bai wanted to do it. Today she wore her “mom’s BFF” shirt and that’s exactly what I feel 💚 she’s my first baby. She’ll always be my first baby and have that special place in my heart. I love our growing family, but it is nice to be able to take the time to focus on just Bailey. And same thing goes for when I was home with just Emma this past week. It was whatever Emma needed in that moment. Not having to split my time.
I will say though, Bailey MISSES her sister SO much. You’ll see in the photos a little baby doll who Bailey has named “Emma”. And Emma goes with us everywhere! We played play doh with “Emma”, changed “Emma’s” diaper, took “Emma” on stroller and car rides through the hall! It had made my mommy heart so full seeing how much love Baikey has for her sister. Can’t wait to be home again as a family 💚