Day +57: Agonizingly slow progress

Mina Brigitta has been off of the IV nutrition for over a day now, and her bilirubin is still going up. No need to panic yet, they still think it'll reverse over the next few days as she starts eating more and moving the bile through her system. If it's still going up Monday, they'll probably do an ultrasound to check for veno-occlusive disease (http://www.emedicine.com/ped/topic2396.htm) or graft vs. host disease. She's not exhibiting any other signs of a major liver disorder (liver is a bit "generous" but not painful, she's no longer retaining fluid, no other signs of GVHD like diarrhea or skin rash), but we can't help but worry. GVHD in particular is just like cancer in that it can come back at any time, so things like this are always worrisome.

She did eat better today, but we're still taking it very slow. She had about ten bites each of ramen noodles and winter squash today, but she gagged a bit after the last bite, so we stopped right away. No throwing up today, so that's the good news. Otherwise, she had another nice day. I took her for a walk in the hallway, and we sat out there in some chairs and read books for awhile. She had a visit from another book buddy, and then got to hang with Zeedie while Keri spent a much-needed and much deserved couple of hours on the beach. Zeedie flies out tomorrow morning. She'll be sorely missed, but "Mommamomma" arrives in late morning for a two week stay. We'd been hoping that she could help us move home. That's still possible, but she needs to start eating more!