Since my last post, Logan's bilirubin level has continued to rise. This morning it was 8.2, which is much too high. I don't yet know his weight. As a result of the bili level alone, it's likely that the medical team will recommend he begin a study drug, Defibrotide, to try to help his liver to heal. We're torn over whether or not we should move forward with that. On one hand, his bili level is climbing, and it's much too high. If he does indeed have VOD, trying to manage it sooner than later is essential since renal failure can result. On the other, no one can be sure that his bili level is elevated because of VOD. It could be the result of a number of other things, including his IV nutrition or any of the several antibiotics he's on. In addition, one of the potential side effects of Defibrotide is catastrophic bleeding.
On the plus side, his WBC recovery has begun: His white cell number was up from yesterday's .3 to .5 this morning. Hopefully, this means the awful mucositis and other ailments will begin healing themselves very soon.
I never, ever imagined that we'd be dealing with anything like this back when I was young and naive. (Or, last year.) PLEASE pray for healing for Logan, that his liver will heal itself and the bili number will come down in inexplicable fashion, and that we'll make the right decision about the Defibrotide.
I'm feeling discourged, upset, frustrated, lost, angry, helpless, hopeless... just about every fearful, defeated emotion I can feel in addition to being scared to death. And Logan really, really needs help. We all do. We need the full, powerful team in action and interceding on his behalf right now. Even if you think I'm nuts, please pray and ask others to do the same. I want to be able to come back here and share how God showed Himself in a powerful way. Thank you.