11/16

My butt hurts. Sitting in the car for so long to get home and then sitting through dialysis. Ouch! I am not designed to be sedentary like this. I am a mover and a shaker.

Ethan is now voicing and venting his frustrations. I am glad he isn’t keeping it in. He is terrified. He is angry. He is mad that he is transitioning into an adult all while dealing with the stress of his medical conditions. He feels left behind by his peers as they venture on and have jobs. There really isn’t much I can do besides listen. 

I know this will get better as things improve after surgery. Once he gets his energy back. Once he gets his time back. Then he can start getting his life back.

However, I have a vision of how things will go and I know there is a small chance it will go exactly how I envision it. We will just weather the storm. I am hoping to enlist the psych team’s help once we are there and there isn’t anywhere he can run and hide??? 

Ethan had some abnormalities on some of his bloodwork. They are values we have been tracking. It appears his anemia is creeping back into the picture. I immediately sent the results to Ethan’s dialysis nurse. He has medication waiting for me to pick up tomorrow before dialysis. The medication stimulates the production of red blood cells. I am glad it is being dealt with because I want his CBC to be as close to normal (for Ethan) as possible heading into surgery.

As I drove home today, I had a call with Ethan’s NYC endocrinologist. We have a plan in place for how we will tackle Ethan’s thyroid issue as well as pituitary growth, after surgery.

It was good to be home with Paul and Avery. Ethan and I both felt like we had been away for a week even though it was 48 hours.