Obviously, the big news of the week was that Annabelle got discharged from the hospital Wednesday afternoon!!  We are now all three living as a family in our Ronald McDonald House apartment. As exciting as this was it was also somewhat terrifying knowing that we were being sent home with so many medications to manage.  Luckily, being parents of a metabolic child we’re already used to strict feeding and medication schedules so we knew we were up to the challenge. However, Annabelle has never been on this many meds before and I especially feel very flustered until I get things organized and in a routine.  Our first night here was spent trying to figure out all the meds and formula to put into a system that works for us.  So far ziploc bags have become my best friend in helping us manage her medictions and times. 

Unforunately, because she’s on so many meds her stomach has had a rough time adjusting.  Annabelle’s also on a weird formula mixture right now which isn’t helping her tummy issues.  Within our first 24-hours home she threw up four times (this is super terrifying as a metabolic parent)!  Before transplant any episode of persistent vommiting could lead to a crisis and always meant a hospitalization.  Although cleaning up vomit and doing loads of laundry is no fun, we can say with excitment that her throwing up hasn’t caused her to go into a metabolic crisis.  This means that her new liver is working well because she has remained metabolically stable. Luckily Annabelle has only thrown up once today so some minor changes to her formula and medications has seemed to lessen the episodes (although we don’t go anywhere without bowls and burp clothes nearby).  

The next scare we had was last night when her stitches came out of the site holding her JP drain in place in her abdomen.  It started to pull out slightly and we had to call the transplant coordinator on-call just to make sure we didn’t have another exciting trip to the Emergency Department.  The coordinator on-call wasn’t too concerned as those stitches come out all the time.  The bad news is we have to tape around the site and try to be careful when moving her so that it doesn’t come out.  The doctors are still closely monitoring her drainage so if her current JP drain comes out then they might have to place another one in it’s place.

Annabelle had her first blooddraw and clinic visit on Thursday.  Annabelle’s liver numbers are back in the normal range so they were able to decrease her predisone slightly (yay for less steriods). 

Annabelle’s feeding and medication schedule has really taken up most of our time lately so we haven’t gotten to do anything really fun yet other than take her to meals with us.  Hopefully we’ll be able to venture out soon to do some fun stuff.  I’ve definitely got to get Annabelle some more clothes.  Her new liver is a bit larger than her old one so her stomach pokes out A LOT.  The steriods also make her puffy.  The dress she flew in with didn’t fit at all and neither did her clothes back home.  We even had to use some donated outfits when we left the hospital since we had nothing else to fit her!  I went to Target yesterday and bought her several dresses on clearance just to get by for now.  Annabelle is only 11 months old and I had to buy 3T to fit her!!  It’s difficult to find shirts big enough and pants that aren’t too long.  It’s going to be interesting this winter to try to keep Annabelle clothed properly!

So little by little we’re adjusting to post-transplant life and each day is getting a little bit easier as we settle into our new routine.

Please continue to pray as we still have a long road ahead!

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.) Continued prayer that Annabelle’s drainage would clear up so her JP drain can be removed.  Pray that her current drain would stay intact (even without stitches) until the drain could be removed.

4.) Continued prayer that Annabelle’s liver numbers would continue to trend down and that her body would accept this liver as her own.

5.) Pray that Annabelle would adjust to all these different medications and formula and that her vomitting would cease.