The big news today was that Hana’s first biopsy results came back with zero rejection! I hope this is the result she gets for the rest of her biopsies. The big long term problem is actually with the coronary arteries of the heart and is often why a retransplant is necessary. Much of this is not yet well understood so in the meantime Paul and I are going to be making some diet changes. I think we’ve always done pretty well but now we are going to do better.
The other news today was the result of Hana’s tacrolimus (Prograf, her most important anti-rejection medication) blood test which was even lower than yesterday. This is not good. Her levels need to be within the goal range in order for her to be discharged from the hospital. They keep going up on the dose but her levels go down. This actually means that her kidneys are doing a better and better job – so that is a good thing. So, they have gone up a tiny bit again on the dose and will test again tomorrow. It’s really important to get this right!
I am impatient to leave the hospital mostly because Hana must get breathing treatments twice a day while she is inpatient. This is because of the construction around the hospital (for the new hospital) and the spores in the air are very dangerous for transplant patients. The breathing treatment involves holding her down in bed and forcing a mask over her face like you are suffocating her so that she breathes in the yellow vapors of amphotericin. She fights and cries and sputters and gags. It’s awful. Of course, she is too young to understand how she is making it worse.
I really hope she can be discharged Sunday but I’m not too optimistic.
Hana is getting her IVIG therapy today. They are running it over 18 hours instead of 24 so we’ll see how she handles it. Before, when they ran it faster she spiked a fever and everyone got worried so we don’t want that to happen again. Since Hana will have to get IVIG therapy as an outpatient treatment, if it can be done in less than 24 hours then she can go to the short stay unit instead of being admitted to the hospital every time. Hopefully it goes well.
Other than all that we are just waiting around. Hana has started to eat a little. She is definitely showing more interest in food. It makes me want to cry tears of joy. I know a lot of parents stress about their young children not eating very much. Hana has never been an eater. I don’t think she’s ever eaten more than a tablespoon of food (and that was a very rare occasion). I hope she is getting ready to turn a corner!