10/20/22

We had our SSI revue today. Ethan had to make the call. He acted like I was forcing him eat a poop sandwich. I had all the info that was needed and coached him ahead of time. Once he got on the phone, he was pleasant and did well. 

 I got the call today from NYC. We don’t have biopsy results yet, but Ethan’s bloodwork is looking ok. He does have some abnormalities in his cbc (but that’s not new). He has a low white blood cell count. It’s not the worst bloodwork. The doctors are happy with where things stand otherwise.

I did mention today about Ethan’s anger towards his family. I told them about the things happening within the household.

We discussed how things were being perceived and said at home. We came up with a tentative plan for Ethan to talk directly to the doctor without me present. This is fine by me. The doctor wants Ethan to switch medications because it is easier on the kidneys. It involves blood draws a few times a week. Ethan completely turned it down and said NO! The doctor wants to really talk to him but not pressure him. 

It’s hard to understand. If something could preserve the kidney it seems like a no brainer. I told Ethan that he is an adult now. He can make his own medical decisions and our role is to support him along the way. We may not agree about the decision, but I can be supportive. I have not approached the subject today. I gave Ethan his space to decompress.

I am hoping they can get through to him.