Good news - Macsen didn’t have any sweating, lethargy spells today. Not great news - He did have a few periods of his “heart beeping fast.” It went from the 60s and 70s to 120s for no reason - no running or activity at all. His appointment is in 1 week in Birmingham. We are praying his BNP has come down and his heart function looks visibly improved via echo but are trying to prepare ourselves if that is not the case. We are supposed to meet with the transplant team then as well and I don’t think I have never dreaded an appointment so much in my life 
We know Macsen has very high antibodies - in the upper 80s - and at this time it would be very hard to match him up to a heart. None of this is easy and I am feeling overwhelmed by all the variables, decisions and the weight of all those decisions. What center do we use? When should we take him? What about his sisters? We will know more in a week - hopefully. And I pray we can continue to improve at home on his medication
We know Macsen has very high antibodies - in the upper 80s - and at this time it would be very hard to match him up to a heart. None of this is easy and I am feeling overwhelmed by all the variables, decisions and the weight of all those decisions. What center do we use? When should we take him? What about his sisters? We will know more in a week - hopefully. And I pray we can continue to improve at home on his medication
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