❤️ 5/27/21

We had dialysis training this morning. I was in a much better place mentally today. I am going to miss all the fun I have with my BFF dialysis nurse when I do this at home. I may lobby to the admins to have extra “support” from my BFF dialysis nurse for an extended period of time so that I can continue laughing. It is a purely selfish request.

I was told that tomorrow I will learn how to do the “sak test”. I am not sure what it entails but I am going to stretch extensively tonight. The sak test. Can you imagine the giggling coming from our room? 

When we arrived home, Ethan hopped out of the car and within a few short minutes, had grabbed his camera and started filming, which is a great sign. He is slowly starting to feel better. His energy is slowly returning.

He also was pissed about yesterday’s events. When Ethan gets pissed, he gets determined. He was the kid who wanted a toilet, on ECMO, and was trying to get out of bed despite all the sedation and paralytics thrown his way. He gets a fire inside him to move forward. Not sure where he gets it from. (Ha!)

I was able to work a little bit. I was able to also stop at the pharmacy and pick up the medication that’s side effect is to raise Ethan’s sub therapeutic level to protect him. I am nervous it may cause stomach upset. That is also another possible side effect. 

Because of the low energy and upset stomach already he hasn’t been gaining weight as fast as I would like. His tongue still feels like it is being stabbed by a thousand swords. The mouthwash helps. But damn it he is trying to heal.

He went to physical therapy today. It’s the first time in about a week. He did good. 

Today was a pretty good day. It makes up for the crap yesterday. Ethan and I were both in good spirits.