We have now been here for three weeks! Everyone thought it was going to be two or three days. We are all getting weary of being in the hospital. The good news is that Hana is doing much better, for the most part. It still feels like two steps forward and one step back but at least that’s still overall progress.
Over the weekend Hana started walking and playing around the room, not just sitting in bed or in the wagon. She’s a bit wobbly on her feet and I want her to get her strength back so I’ve been pushing her a bit to play standing up. Her mood has been better – laughing, smiling, playing and singing. Her diarrhea is gone. Her appetite has greatly improved, although still almost entirely starches.
I thought I was going to have to go to battle over Hana’s NG tube feeds but the attending physician (the head of the transplant cardiologists) stepped in and reassured me that his end goal was the same as mine and in the meantime he really thinks she needs the extra nutrition. Their goal is only 50% total calories from tube feeds and I can live with that, especially since she probably needs the extra help right now. They’ve also been very willing to listen to what I think about her feed schedule and the amount of Pedialyte versus formula. I think it’s been going fairly well. Hana is still battling with a lot of bloating but that seems to be getting better.
So I feel we’ve taken a bit of a step back too. Hana is now anemic from all the blood they’ve taken recently, so she is now getting liquid iron which makes you feel really terrible. We’ve started putting it in her formula mix so she gets it over several hours which has made it better but it is more iron than they typically prescribe. Yesterday Hana’s hematocrit was so low that she got a blood transfusion. Ordering a blood transfusion is never a trivial thing for pre and post transplant patients. About an hour into the transfusion the rash that cropped up about a week ago suddenly got much worse looking. It also looks the worst in the area Hana still has lingering bruises from lovenox injections (while on the Berlin Heart) AND under her hospital ID band on her ankle. The rash could still be from the adenovirus but these latest developments are odd so now we are waiting on a consult from dermatology. Hana tossed and turned and had screaming fits all night long. I think the rash is starting to really bother her. So today we are both VERY tired! In addition, Hana’s weight is up significantly from yesterday, not a good thing. She looks swollen again, her respiration rate, heart rate and blood pressure have been high.
So at this point, we have a nice list of things to resolve before getting out of the hospital. We need Hana on a good nourishment and hydration plan with oral eating and tube feeds. Her Tacrolimus level needs to be stable. She needs to restart her Cellcept and a few other meds as soon as she is not neutropenic. Of course, she needs to test negative twice in a row for adenovirus so we can stop the Cidofovir treatments and I’m thinking at this pace, she will test negative twice before we got the other things resolved! Hana’s bone marrow, liver and kidneys all need to keep up with all the extra load they’ve had to carry. Hopefully we can get her back to health without any more complications.