Devin's home...

I would like to report that our experience at Children's Hospital Los Angeles was extraordinary, but I can not. The surgery went well and I have great confidence in Dr. Kay's ability and success but the administration of the hospital has something to be desired. LIke I mentioned before Devin was not placed in a real room, and he never was. He spent his entire time in the post-or recovery area. This is the place that patients are supposed to be for maybe 2 hours before they are sent to their real rooms. Devin unfortunately spent his entire time there so every time someone came out of surgery you could hear the cries and screams from the other children as they awoke. It was VERY stressful and hard to relax. We keep buggy the staff about Devin getting a room but by mid-morning he had enough and was crying to leave. He got to the point that he was doing everything he could to meet the requirements to leave and refused to eat lunch because he didn't want to spent another moment in the hospital. By this point Denise and I were throughly pissed and started taking it out on the staff. When we finally had him setup to leave and I met them at the lobby with the van Devin still had his IV in and they had to come take it out in the front of the hospital. It was a real mess and neither one of us was impressed by their operation. The staff was very friendly but that doesnt' make up for an unpleasant experience for Devin (or the other four families in the same boat). I did hear the next morning that they canceled the scheduled surgeries because of the lack of rooms.

Devin is now home and he is doing pretty good. We did have a bit of an overlap (or underlap) of the pain medication so he was in a lot of pain the first night. But we got him under control and have been making sure he receives his regular doses of pain medication. He spent his first day in his room and we just adjusted him from there. He is really uncomfortable about moving and right now doesn't want to mess with the wheel chair. I imagine tomorrow we will move him around move and probably get him in the living room. He did try to play a video game today and had a bit of a breakdown when he realized that any jerking motion from playing the game was extremely painful. The little guy is doing exceptionally well and we are all very proud of him but this is going to be a long recovery period of him.