Life should come with instructions
I'm so frustrated right now because I don't know what we are supposed to do with Gavin. He's showing the very same signs and symptoms that ended him up in the hospital, twice in the last 30 days. There are no instructions or standing orders as far as an autonomic crisis, partly because they are so uncommon. This evening Gavin has presented with blurry vision and chest pain. I have him on a heart rate monitor, so we can have a real time gauge of where it's sitting at. In the past hour, Gavin resting heart rate has increased to about 107 bpm, up from about 90 bpm. When he stands up, his heart rate jumps up about 20 bpm. This is not necessarily a reason to go to the…