Last time I posted (over two weeks ago, yikes!), we had discovered that Lillian had a med level that was 2 to 4 times higher than it was supposed to be. At the time, we thought that was the cause of Lillian's issues, but once the rest of the family came down with flu like symptoms, it was fairly obvious that was a factor as well. Lillian managed to get good enough for Children's to discharge her after 4 days, but she was back again 2 days later (Wednesday at this point) due to worsening symptoms.
It turns out that the 1-2 punch of med levels and flu caused her to lose the lining of her stomach (we think, we would have to do a biopsy to tell for sure, and that isn't worth it). Turns out that the med that was high (CellCept/MMF) interferes with the normal growth of the stomach lining. Normally this is just something we have to live with, but at 2 to 4 times the level that it was interfering more than we would like it to, and the flu/whatever she actually had just caused it to get worse.
We ended up spending about two weeks total in the hospital, trying to get Lillian's symptoms under control and get her back up to speed. For most of the stay, she was on Pedialyte so we had to switch her back to normal food, which she couldn't digest, only causing more issues. In the end, we had to switch her back to special formula (Alimentum) which is broken down more than normal formula so it is easier to digest. We finally got her to the point where she was digesting enough for her to come home last Friday, although she continues to show some symptoms. Her demeanor however has returned to normal, so she seems to at least be feeling much better.
|Annabelle immediately returning to form upon arriving at Children's|
Of course, the MMF level isn't our only concern, as Lillian's lack of digestion also caused her Cyclosporine levels to dip in the 80s (we want her 250 to 300), so now she is sick due to that readjusting to normal. On the bright side, the low levels probably allowed her to fight off the bug a little better. To help her recover, we've switched her from MMF to Azathioprine for now (rejection meds with similar methods of action).
The other girls are doing fine. Ailah is healthy and eating well, and Annabelle turned 3 today. And now, pictures.