As most of you saw on Facebook, Annabelle had a very fun and exciting morning. First, she had a visit from Rambo the therapy dog…she didn’t know what to think of him since he was smaller than the other dogs she’s been around. Next, we got to take Annabelle down to the 6th floor where the umpires from the Pirates game were hosting a Build-a-Bear event for the kids. Annabelle enjoyed her wagon ride down to the 6th floor and loved seeing all the people! There were many cute stuffed animals to choose from so we held each one up for Annabelle to smile at….and the Minion won out! We got a cute pair of overalls to dress him and then also took some pictures with the Pirates’ mascot. Then we took Annabelle outside for a few minutes to the healing garden to get some sunlight and fresh air! In the afternoon she had the grandparents there to play with her while Mike and I went out to explore Pittsburgh for a few hours. The grandparents will be leaving tomorrow so today was a good time for them to spend a lot of time with Annabelle and a good opportunity for Mike and I to get out together one last time.
Annabelle is still acting great and playing hard. However, her ammonia was slightly elevated this morning in the 60’s (although it did drop back to 51 by this evening). Her lactate is still great at 1 which is still encouraging. This afternoon around 5:30 they also started slow feeds again through her g-tube. Hopefully, she’ll start tolerating food in her stomach and we’ll be able to remove the NJ tube soon (she hates having the “No-No” on her right arm preventing her elbow to bend so she won’t mess with her tube). The genetics team also modified her formula with less fat content to hopefully help with the “milky” drainage in one of her JP drains.
The discouraging thing is that Annabelle’s liver numbers doubled this morning (they monitor these numbers closely each day). So, the transplant team ordered an ultrasound today to check to make sure everything is flowing well; we haven’t gotten the results yet as the ultrasound techs didn’t come to her room until later this afternoon. Unless Annabelle’s numbers drop with tomorrow morning’s bloodwork, the doctors will have to perfom a liver biopsy tomorrow to check the liver for rejection. Although this sounds scary, rejection can usually be treated with changes to her medications. Unforunatey, if she is rejecting then she’ll be on higher doses of meds for longer and staying on more meds longer to treat the side effects of the higher dose anti-rejection drugs. This also means she would be more heavily immunosuppressed (depleted immune system and more succebtibl to catching stuff). Not to mention this would likely mean a longer impatient stay in the hospital and a longer stay in Pittsburgh overall. So we REALLY need your prayers for little Annabelle tonight!
Prayer Requests:
1.) Continued prayers for the donor’s family.
2.) Continued prayers for exceptional nurses (7B nurses have been really great)!
3.) Continued prayers for no infections and no clotting.
4.) Continued prayers for low ammonia and low lactate levels.
5.) HUGE Prayers for Annabelle’s liver numbers to miracously drop in the morning so she would not have to have a liver biopsy. If she does have to have the biopsy then please pray for a successful procedure.
5.) Pray that feeds continue to go well in her g-tube with the hope that the NJ tube could be removed by the time we are discharged from the hospital.
6.) Pray that the new formula would help clear up her “milky” drainage in her JP drain and that her drains would be removed soon.
7.) Pray for stamina for Mike and I now that our parents are leaving and we’ll be managable everything by ourselves.