Evan's Journey

This has been a crazy week. We left Tuesday to go to Cincinnati Evan woke up with a corneal abrasion. But he slept on the way to Cincinnati. The first day we saw the eye doctor and the ENT doctor. The eye doctor said he had a bad abrasion. The ENT doctor said his vocal cord are swelling. He said he need to go to the OR and get his airway check. So that was schedule for Friday. Then the next day we went to see the EB team. They did some cultures on his wounds. They also looked at his penis, because he has been having problems peeing still. So he said when he goes to the OR, they are going to open him and put a stint in. So Friday comes and his surgery isn't until 3:20. So i new it was going to be a long day. The doctors was running an hour behind. I said OMG. Evan did good he slept alot that day. He went into the OR it took awhile. I talk to all the doctors when they got done. The ENT doctor told me he will need a trach really soon. His airway is getting smaller, so that is so scary. Then the Urology came to talk and he said he put the stint in and cute his the skin more. He said that we need to keep it in as long as we can. So we are hoping when we take it out his hole will stay open. Then they did some blood work to. His blood work came back and his iron is low again. So he will need iron infusione done again.
So any way Evan little boy part is sore. But he was so glade to be home. He has played and played. We are so glade to be home. We was going for 5 days.