Well as most of you know, all of Annabelle’s liver numbers were lower last Friday which was a HUGE praise. Her EBV also dropped slightly from 43,000 copies in the blood stream to 41,000 copies (it wasn’t much of a drop but hey, it’s better than going up!). The transplant team was actually able to lower her prednisone even more to only 0.8ml ONCE a day. Yay for Annabelle being so close to kick the steriods! This decrease in steriods should also help lower the EBV and control it better.
If you remember, the team also wanted Annabelle to have an MRI done to check the suspusious bile duct issues that showed up on her biopsy two weeks ago. Since her gGTP dropped from the 50’s to the 30’s the team is going to hold off on the MRI unless her gGTP starts to creep back up (they get worried if it starts reaching in the 100’s).
So, the plan is to get repeated bloodwork TOMORROW morning. IF (and that’s a BIG IF) all of her labs look good then we will have our last transplant clinic on Monday to tie up loose ends. Then we’d be heading “to the zoo” on Tuesday just in time for Thanksgiving! Even more of a praise is that a sweet woman from our church will be traveling through Pittsburgh to visit family and had already planned to stop in to visit us on Monday. She’s generously willing to also pack up her car with some of our stuff (we’ve accumulated a lot of stuff and it would have never all fit into our Camry). Isn’t God’s timing amazing!?
We’ll keep you all updated!
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 would have an increased appetite, and that the feeding therapy would help her eat more food by mouth.
4.) Continued prayer for Annabelle to continue to gain strength and make huge strides in her physical development.
5.) Continued prayer for quick blood draws, and that Annabelle would get more and more comfortable with each one that passes.
6.) Continued prayer that Annabelle’s heart thickening is only the result of the steriods and not due to the start of Cardiomyopathy as a side effect of her disorder.
7.) HUGE PRAYER THAT TOMORROW MORNING’S BLOODWORK RESULTS WOULD SHOW LOWER LIVER NUMBERS AND LOWER EBV
8.) PRAY THAT MONDAY WOULD BE OUR LAST TRANSPLANT CLINIC, AND THAT WE WOULD BE ABLE TO HEAD “TO THE ZOO” ON TUESDAY! PRAY FOR ALL THE LOGISTICS TO BE SQUARED AWAY IN ORDER FOR US TO FEEL CONFIDENT IN ANNABELLE’S CARE IN NORTH CAROLINA.
9.) Annabelle’s Prograf (main anti-rejection drug) is getting harder and harder to administer. This is our biggest concern when Mike goes back to work and I’m having to administer it by myself (right now it takes both of us to get it in her mouth). Pray for solutions for administering this medication.