This past week has definitely been more positive than the last. Annabelle responded well to the increased predisone and her liver numbers went back down. This was huge because this minor rejection episode was able to be treated with medication only without the need for a biopsy or hospital addmission to receive more high-powered steriods. For this we are so thankful! We are also thankful that her EBV surprisingly dropped as well (which impressed us because we knew for sure it would increase due to the increase in steriods). Plus, Annabelle had a very quick and uncomplicated blood draw! This just shows us that God answers prayers because He answered all three of our specific prayer requests on Monday. Thank you so much for praying for her!
We will repeat labs again first thing tomorrow morning to see if the liver numbers have continued to trend down this past week. The transplant team did lower her prednisone slightly on Thursday as they start to wean her off of it again. Our hope is that we don’t decrease too quickly like we did before. Right now it’s really just a careful balancing game of EBV and immunosuppression, which is why we are having to live in Pittsburgh for so long. The Physician Assistant did mention the “H” word that rhymes with dome last Monday with a projection of 2-4 weeks so we’ll just see how things play out with Annabelle’s labs in the coming weeks.
The only medication the team can’t seem to balance right now is her Prograf (her main life-long, anti-recjection drug). Her level dropped to 6.9 this week even though we have made sure to not feed her at least 30 minutes before or after the dose. They really want her level to be between 10 – 12 and since her level keeps dropping they had to increase her dose yet again this week. Plus, we’re having a difficult time getting this medication in her mouth because we have to open the capsule and sprinkle the medicine in her mouth (she does NOT enjoy this). They do not make a liquid form of Prograf so it cannot be administered through her g-tube like the rest of her medications. We’ve gotten very creative in getting this medication in her mouth!
Annabelle has also had two feeding therapy sessions so far and this week we’re going to start therapy twice a week on Mondays and Thursdays. Annabelle has made some progress the past few days and has taken some food by mouth! Progress is always a great thing!
Thank you for your continued prayers!
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 continue to trend down this week.
4.) Pray that Annabelle would have an increased appetite and that the increased feeding therapy would help her eat more food by mouth.
5.) Pray for Annabelle to continue to gain strength and make huge strides in her physical development.
6.) Pray for quick blood draws!
7.) Pray that the administering of Prograf would get easier and that the transplant team can get her level where they want it.