Well it's been 13 days after surgery and we have been home 2 full days now. You are probably wondering how it is going.....
It's going OK. It's overwhelming and exhausting for me; really for everyone involved I think including Noah. I was not under the belief that we would come home and everything would magically be better because Noah was in a home environment versus the hospital environment and I'm very glad that I wasn't under that impression because that would make all of this even harder to deal with.
Noah is sleeping better but he is still in pain, hard to comfort, frustrated, etc. He can't be alone for even a minute because he tries to do things that he shouldn't be doing yet like get off the bed on his own, crawl around, get out of the wheelchair, etc so someone has to be with him at all times. He gets frustrated because he can't do all those things.
He is having a lot of flutters which are seizure like activity. He hasn't had seizures in a long time but I guess sometimes surgery can stir all of that up and hopefully it will get better though. I have put a call into his neuro though so we can have his levels checked.
It's all going to get better. I know it will; it's just slow going.