The life of a professional air hockey player.

Yesterday was very consistent. Today has been a little bit more up and down. I think that we are mostly to blame for that, though.

It started off really well. He slept great last night after some anxiety about falling asleep in the first place. It wasn’t as bad as the night before, but he was worried about going to sleep, and super sensitive to all if the pain and discomfort adding up. Julia got into bed with him, sang to him, and snuggled with him, and that seem to settle him down. They both slept well, which was great news.

We started off today well and we decided to take an adventure. Julia and I loaded him up in his wheelchair and we headed out. At first we did a lap around the floor while he was getting some medicine through his IV. Once that was done and we didn’t have the tower trailing with us we decided to take him down to the main floor of the hospital. We went through the cafeteria, went outside for a very very short period of time, and ended up over at the kids zone which has lots of fun activities for patients. We went straight for the air hockey table which I knew he’d like. It was a little tough for him being in his wheelchair, but he still was able to do very well with it and we played a few games. We could tell that some of it was hurting as he would try to hit the puck and twist his body around and moved more than he has in a long time. I was worried he might hurt himself and he was a bit worried too so he asked me to just hit the puck in the middle so he didn’t have to move too much to get it back. I did my best but that’s a little hard with air hockey.

After a few games, he got sore and tired and we decided to come back up to our room. It was around this time that he started complaining about his stomach hurting and being uncomfortable. We put him back into bed and hoped that that would make him more comfortable, but it didn’t seem to help too much. Since then it’s been a battle trying to make him comfortable, and getting his stomach settled back down.

I think we overdid it with the air hockey. We were just having too much fun, though, and it was hard to stop seeing him smile and having fun.

But then some visitors came and that’s helped get his mind off of the pain and to fill up some of his time with other fun activities. Here’s a picture of him playing one of his new games with some of his cousins.

On a more medical note, he’s now pretty much disconnected from everything. His catheter was taken out earlier today and that was the last thing he was really hooked up to. He still takes some medicine through an IV tube but isn’t being given an IV constantly.

We’ve got a few more visitors coming today, and I hope that we can do a good job of making him more comfortable and getting him back on track with managing his pain and eating. I guess it’s a lesson learned.

We are planning on being discharged tomorrow and I know he’ll be happy to go home. And even though he’ll still be uncomfortable there, it’s home.