So the morning after Hana’s fever her mood improved dramatically. She still wakes up cranky and sleep has been problematic but yesterday (Tuesday) she actually smiled! I was so surprised.
I think this was the most encouraging development for the medical team too. During rounds they discussed delaying her next Cidofovir treatment by one day so that they could look more into drug reactions. So it ended up being a quiet day with just playing with toy food and licking Pedialyte popsicles. She had no more fever or rash. She seemed in a much better mood all day and did well with playing and talking. She continues to have lots of gas and a distended stomach.
Today (Wednesday) followed a very restless night of sleep. Overnight they transitioned Hana off her TPN (IV nutrition) and increased the amount of Pedialyte she got through her NG tube. Hana seemed in good spirits, relatively speaking, with more smiling, playing and singing. As the day wore on she did seem much more cranky for food. She would get frustrated with her toy food and then cry.
Two GI doctors came to see her and felt it was a good time to start half strength formula/Pedialyte tube feeds. They said there is never a guaranteed time when it’s safe to start and sometimes you just have to try and test how things go. After Hana’s Cidofovir treatment finished they started her on the half Pedialyte/formula feeds. An hour after that she was crying so much for cookies that I decided to give her a cracker. She nibbled it nice and slow. Then I gave her another. Over the next three hours she ate six packages of crackers (saltines). She was pretty happy about it! Now we wait to see if she throws up or gets more diarrhea. Hopefully not and we can get out of here in the next few days or so. I know I need to get out of here and get some sleep! I’ve been completely exhausted!