Today ended up being a quiet day. After Hana’s initial fever, the nurse took the ice packs away when her temperature went back to normal. It never got high again. We had a great day nurse who was on top of every detail. Hana was mostly quiet with just a few thrashing episodes.
I was able to get bills and other administrative stuff done. I even left the hospital to go to the bank.
Today the heart failure/transplant team (the P.A.C.T team, Pediatric Advanced Cardiac Therapies team) had a meeting. One of the cardiologists tracked us down afterwards to talk more about transplant. They seem to believe it’s about time to re-evaluate Hana for the transplant list. We started many parts of the evaluation process back in February but I guess we will need to go through it again. I’m starting to feel better about a heart transplant. Before any of the process can begin we need to get Hana over this virus and back to relative help.
This evening we talked with a woman who is here with her seven year old son from eastern Oregon. He had a pump put in place and when he recovers he will go back on the transplant list and wait here for a heart. This woman has five kids and this is her youngest. Her oldest and her middle child have both had heart transplants. In fact, her oldest just had her second transplant in June. They have spent many, many more months in the hospital. Their kids lived in the Ronald McDonald house and went to school in Palo Alto. I am in awe of her. She has a good attitude. Her family seems to have done well through it all, in fact she delivered one of her kids here because they were here so long waiting for a heart. Her kids diagnosis was dilated cardiomyopathy, just like Hana. Genetic testing came back negative.
The goal is to keep Hana comfortable quiet and consider extubation tomorrow or Friday. They have her prone again in hope to get her left lung sounding even more clear.