Trading places

Tom and I switched places tonight. Tom wanted to spend the night at the hospital with Riley. There was a traffic jamb on the freeway for him on the way in, so it took him an hour and a half to do the 35 minute drive. I made it home without mishap.

I feel somewhat relieved to have an action plan. I do have faith in modern medicine. Riley is not the first nor the last child to have this disease. The doctor felt this was a good course of action.
Having an action plan is huge. All that waiting was tearing us up inside.

Trevor was happy to see me when I came in, sort of. He was on the x- box playing one of those used games I got the other night from the Hollywood video close out sale. I made him get off the game and show me his school work.

The house looked wonderful. Another friend had dropped off dinner. It was beef stew in the crock pot, still warm and waiting for me. Its 7:00 pm and the first time home since 8: 30 pm last night.

Trevor got out his work for me to look through for school. I am trying to stay on top of that work. I think we both are sad and relieved that he is not a match. It is a scary thing for a 12 year old to be burdened with his brother's life. I have arranged for Trevor to go out of town with an old friend for the weekend, to distract him and give him some fun.

With this proceedure, I want to focus on Riley for a couple of days to see how he progresses.
It will be a slow process. It may take weeks to see any changes. I want Riley to get used to living at the hospital. Its like that first day of kindergarten when you drop your child off and the teachers want you to leave. Except this time they need you to stay. Think of it more like a parent teacher conference night.

We have been inundated with different specialist telling us details of what to expect and choices we have to make. Riley used to say he didn't want to go to school, now the poor boy is saying he is bored and when can he go back. It will be months. No crowds, no school. The doctors said no Friday nights at the movies, don't even take him to the store during the busy times. His weekend at the beach is canceled.

The window seat is not a bad bed. Tom said he found extra blankets for himself.
Tom is looking forward to being woken for blood tests at 3:00am and platelets at 5:00am so Riley will be ready for Pick insertion in the morning. Tom snuck in a bottle of wine for himself. So I guess they will be OK until morning.

I am going to tuck Trevor in. We have to be up for school at 6:00 am. I am taking in the letter from the doctor so we can get the tutor system set up. The hospital has a teacher to assist and coordinate with the schools so Riley doesn't fall too far behind hopefully. I had to ask about clarinette practicing. I was told it depends on how well he plays. It could be door open or door closed practices. We were told the story of another patient having a piano in the hall. Dornbeckers is amazing.