Last night was not very restful. I am very thankful to be home. The constant alarms going off and bed checks only allowed sleeping periods of 20 minutes at a time.
This morning was busy. During rounds, Ethan’s team of 9, yes 9 people gathered to discuss his case with me. Each one with their own computer, it was a sight. It was nice to be included within the team and I was able to mostly follow along.
Ethan came back with a positive infection for Epstein Barr Virus 🦠. This is good because this means if he does get a heart from someone who has had it in the past, his immune system will be more equipped to deal with it. Apparently it is VERY common and a lot of people have no symptoms at all.
His repeat echo showed that while his heart is still failing, he is trudging along.
The doctors are taking his Pro-BNP numbers seriously. Pro-BNP is a test that measures peptides made by the heart. Normally only small levels are present in the bloodstream. High levels indicate your heart isn’t pumping as much blood as your body needs. When this happens, it helps the doctors determine heart failure. The normal range is 0-450. In April, Ethan’s test was around 7500, a little over 16 times higher than the high normal. Yesterday Ethan’s number for the same test 19,739. So he is definitely progressing. He body was keeping up until this virus knocked him on his butt. His level is now a little over 43 times higher than it should be. Yikes.
The plan moving forward is to add the “pee pill”, Lasix -20mg once a day. He will let the virus run it’s course. Hopefully the insurance should be set by that time. If not, the doctors are all on board with plan B and think it will get us to NYC. We were told we are going one way or another in the next 3-4 weeks. After that visit, they told us that “things are going to move very quickly”. We now have Ethan emotionally preparing for being in the hospital for a while. He is not happy about it.
One of his doctors was talking to him and I asked him what his thoughts were about what she said. He said ”I stopped listening to her when they brought my lunch in and was mad you kept asking questions because I was hungry.” Which to me means he is clearly feeling a little better. His appetite is there.
Another interesting thing that happened is that he didn’t want to talk to the emergency room doctor, he wanted his cardiologist. I made it a point to tell his cardiologist that he, was by far, the preferred doctor in Ethan’s eyes and thanked him for staying after his shift to answer all Ethan’s questions in the ER. More importantly, he consulted with the NYC doctor, later into the evening and they were discussing my kid while neither one of them were “on the clock” so to speak. I feel fully confident in his team in Rochester and NYC. That is a good feeling.
I was also so thankful that Ethan’s pediatrician saw his report from the hospital this morning and called me. She said “really? On top of everything else, he has mono? When is he going to catch a break?”
I am looking forward to my bed tonight. Thank you to everyone for thinking of us, we are doing well.
❤
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