Thursday, September 28, 2017 - Elevated Numbers

Hi everyone!  I'm sorry for our long-overdue update on Annabelle's post-transplant progress.  Overall, she's still doing really well.  All of her stiches came out on the 18th and that has definitely made it more comfortable for her to be on her tummy again.  Her scare is looking really good and healing great!  It's still large but it will look better when she has to come back in 6 months - year to have her stomach muscles sown back up (essentially a tummy tuck).  She's also gaining more strength by the day, although she doesn't want to work during her physical therapy sessions because she's afraid the therapist is going to hurt her (we'll be happy when she gets therapy in our comfortable home setting again with people she knows and trusts).   Her energy level and alertness have also improved and she's really starting to act like a toddler getting into everything she can get her hands on.

Luckily, bloodwork and transplant clinic are still only once a week.  Annabelle has built up a real dislike for the "Frog Suite" where the bloodwork happens so hopefully in time she'll build a tolerance for having to get her blood drawn so often.  We look forward to the day when blood draws will only be once a month.  The transplant team is still very pleased with her progress.  They finally got her Prograf (anti-rejection drug) level where they want it which has been an issue over the past few weeks. However, this week we did have another small set back in that her ALT liver number was slightly elevated (74) and her EBV has tested positive and was double what it was last week.  EBV (aka the Mono virus) will always be an issue for Annabelle because her donor was positive for the virus when Annabelle was negative (this is common in transplant of young people with an adult donor since most adults have had the virus).  If Annabelle's immunosuppression is too high it can cause that virus within her to flare up.  Over time as they wean her anti-rejection drugs the EBV won't be as big of an issue.  Right now the transplant team thinks that EBV flare-up is what's causing the elevated liver number (as all her other numbers look fine).   So they weaned her predisone more and we'll repeat labs on Monday to see where we stand.  If her liver numbers continue to climb then they will likely want to do a biopsy to test for the possibility of rejection.  Therefore, we aren't coming home to NC anytime soon until they get those numbers stable. 

Metabolically, Annabelle body is adjusting to her new liver well!  Her C3 marker that checks for the presence of Propionic Acid has been on a steady decline since transplant.   Her ammonia on Monday was 38 which hasn't been that low since we left Duke when she was three weeks old!  Her lactate was also 2.2 which is a little high but still fairly normal.  She's also getting a lot more protein than she did in the past and she's getting mainly Enfamil with only a small amount of her special formula mixed in. 

Feeding, however, has been a different issue and is our only real struggle right now.  Even though she took a lot of green beans the first time we fed her she's now back to not wanting to eat much by mouth (which is weird since she sticks everything else in her mouth).  We met with the feeding team on Tuesday for Annabelle's feeding evaluation.  The team was overall pleased with her feeding but I left very discouraged.  We were hoping to get tips on ways to increase her appetite or offering more foods with higher protein levels.  However, they told us that Annabelle's feeding was on a 6 month old level right now since she didn't have a great foundation pre-transplant then took such a long break from eating right after surgery.  It's just very difficult to hear that she's delayed in yet one more area when we work so hard with her.  Things that come so easy and normal to other parents just become so difficult for Annabelle. The good news is that Annabelle does have the skills to eat; she just needs more practice - they told us we're basically starting with a clean slate.  They recommended not worrying about trying to get a set volume of food in her, rather focus on her feeding skills through exploration and play.  However, it's difficult for Annabelle to want to eat because she is never hungry.  Genetics has assured us that her appetite will get there and that it usually takes several months post-transplant before their eating really takes off.  Annabelle still has to have a set volume of formula everyday to make sure she's getting enough protein and calories to help her heal.  And we can't cut back on formula until she starts taking more food by mouth.  But she doesn't want to take food by mouth because she's not hungry because of all the formula.  Can you see our dillemia?  We're still pumping a bulk of her formula overnight and what we do have to pump during the day we're trying to pump in her faster, hopefully leaving more time for her tummy to be empty so she'll develop hunger.  They are going to try to get us set up with some feeding therapy while we're here so hopefully that will help.     

We're looking forward to Annabelle's Birthday Party this weekend with family and we're also looking forward to more fall-like weather!  Happy Fall ya'll!

Prayer Requests:

1.) Continued prayer for the donor's family.

2.) Continued prayer for no infections, no clotting, and no future episodes of rejection.

3.) Pray that Annabelle's liver numbers and EBV would trend back down, and that her body would accept this liver as her own.

4.) Pray that Annabelle would have an increased appetite and that feeding therapy would get scheduled soon.

5.) Pray for Annabelle to continue to gain strength and make huge strides in her physical development.  Even though her PT takes place in the hospital, pray that Annabelle would start to feel more comfortable with her therapist to where she would be motivated to work during her sessions.

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