Wednesday, August 15, 2018

Happier at home


Mac is happy to be home. He’s playing with all his toys he hasn’t seen in a month and is just happy to have some alone time in his room. 
He is not eating well - he says he’s hungry but nothing sounds appetizing and we make him several things he thinks he wants but then doesn’t eat. 
He’s still really struggling emotionally - he has breakdowns constantly over things that never used to bother him. He screams and can’t tolerate teasing of any kind or being reprimanded - he falls apart. He’s still having shoulder pain but it seems to be better. We haven’t had to give him Motrin in 3 days. But I wonder if his general crankiness is bc he is still in pain. We see his chiropractor Monday who I hope can help.
Tomorrow we have a post op appointment in Birmingham. They want all the usual stuff - blood draws and X-ray and echo and also check out his new pacemaker. It will be a big day. I hope they can give us a plan for when we should try to get him in school. He is not really better then before surgery - he’s still in extreme heart failure and he is very medically and emotionally fragile. But he also loves school and I want him to live his life, I want him to have these experiences like other kids.

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