Day +30: conflicting signals

Another day of waiting and watching for signs of progress. One sign is that her liver function numbers continue to fall back down toward the normal range. Another is that her stool volumes were less yesterday than the day before, and less again today, at least during the day shift. She's not eating anything, so they really don't want to see a lot of volume. She still is having frequent bowel movements, but the pain seems to be less and she didn't need as much morphine today. Maybe, just maybe, her gut is starting to heal up a little.

But the rash continues to get worse on her skin. It's definitely moving down her arms in a bright angry red pattern, and she's started to blister in a couple of places. She still doesn't have much on her legs or sides, so they're still calling it Grade 3 (out of 4). Grade 3 still has a reasonably good prognosis, but we really don't want to go to Grade 4. Because the rash is still progressing, they started her on another monoclonal antibody called Diclizumab. This one targets a slightly different receptor, one that makes it useful for the skin. The downside is that it makes her more vulnerable to the CMV virus, so they switched her anti-viral drug from acyclovir to gancyclovir, which provides more protection against CMV. She got her first dose tonight, and we're hoping it will start to make a difference in the next few days.

Otherwise, she mostly slept again today. She did interact a little this morning afte receiving some Ativan, and she asked Keri to read her "I Love You Stinky Face" about five times in a row, so that's a good sign. Saturday night she had about 8 bowel movements between 11:30 and 2:30, each one excruciating and followed by an uncomfortable diaper change. Tonight she's had fewer, and they've seemed to be less painful. Maybe tomorrow we'll start to see some unmistakably signs of improvement.