03 Feb Watch
The switch to IV methylpred worked, and Keegan’s ferritin dropped to 18,000. The rest of his labs look roughly the same, but we’ll take it. The plan remains to stay on IV until we see a bit more improvement. I am hoping that if his labs look better tomorrow, we can switch back to oral prednisone tomorrow evening. Then, we will complete the 5-day pulse before weaning back to 7mg. That is the place in the wean, almost a month ago, that we first started to see GI symptoms. We will stay inpatient at a minimum through a day into the switch to oral to make sure he handles it ok. Maybe a Sunday evening discharge. Then we could follow labs closely in clinic through the step down in dosage. His anakinra dosage will stay maxed out until we decide he is stable enough to go back to the standard dose. More waiting & watching.
I was hoping that the drop in inflammation would help him feel better. I was wrong. He was asleep or fighting sleep most of the day. Still extraordinarily crabby. I poured him into a wagon this afternoon to take a trip outside before the rain comes and stop by the library for some more books. He didn’t want to do either of those things but allowed me to pull him around anyway. Then, he wouldn’t let me stop. So, we walked at least half an hour around the cardiac and GI floors before he let me take him back to the room. Then he just stayed in the wagon, not wanting to move, watching Nemo, for another hour before he let me put him back in bed. He perked up a bit when Gray came back from work, asking Daddy to build him a tower of blocks. Maybe I’m too boring for him! It was short-lived though. Gray managed to get him to eat almost two chicken nuggets and walk to the nurse’s station to say “good night” before he was sound asleep again.
Hopefully tomorrow will be better. We’re praying so.
