Just as we were getting IVIG down pat, we (I should say, Zayne) is done. I was told this is the last one, but I have learned that things can always change.
We got to try virtual reality (VR) for the first time. I tried for 3 minutes with Zayne screaming at me to give it back – I thought I was fine, but after I went back to my chair, I realized that I was motion sick (lasted for a couple of hours). Zayne loved it and was instantly addicted.
The new med, Entresto, is being slowly increased in hopes that we can make some progress. “A tad better” is the first positive news from her echo since we left the hosptial. Maybe Entresto (consists of two different medications) is working? We can no longer use BNP to measure heart failure, because Entresto increases BNP. The new measurement NT-proBNP is going down – that is good. I’m not explaining, because I would have to look up the technical reasons.
Still have to go to transplant clinic this week, since Entresto has been increased. Probably will have another clinic before the Nov 2 heart cath and Covid test #4. Children’s Hospital is not using the spit test ?
