4/24/24

 I took today off. I decided that I had been worrying a lot and need a mental break.

Ethan and I set off for his nephrology appointment. We had a good chat in the car about politics, abortion, protest groups, summer plans and his friends.  They were all thoughtful conversations that resulted in sharing views and ideas. These little chats give me insight on the way he thinks. He is his own person with his own ideas.

I can appreciate his point of view. Sometimes it was the same and some times his point of view was different. We both accepted that we can respect any difference in opinion.

We met with the nephrologist. She collected Ethan’s history starting at birth. Oooofffffff! She had limited lab information, so she was comparing the numbers she had, and the  numbers I had access to from Columbia to develop trends.

It appears that Ethan is NOT in rejection (yay!). He just needs to increase his drinking. If he increases he drinking, he won’t need to worry as much about his potassium intake. It will help improve his kidney function.

Ethan has earned himself a follow up trip to the lab in 3-4 weeks. His goal is to improve his numbers by drinking and flushing. If he can get that under control by next month, he will only need quarterly labs and yearly follow up. 

They did say (which we knew) if he gets a cold, fever or any sign of illness, they will likely treat aggressively because he is on immunosuppressive medications.

We left feeling optimistic. My tightrope walk will be trying not to be annoying and mom-ish….fighting the urge to ask “did you drink?” Every 2 minutes. 

I did some meal prep when I got home. I made several types of low potassium “safe” meals. He knows when he eats these, he has room to “cheat” with the another meal or snack with his potassium intake-moderation. EVERYTHING has potassium.

I went to ask Ethan a question and yelled up the stairs for him several times. Each time louder than the last.There was no answer. Oh god! Something has happened. I raced up the stairs and found him fast asleep on his bed, glasses still on. Since his heart transplant, he sleeps VERY deeply. He must have been mentally exhausted as well.

Paul and I were treated to dinner and it was amazing. It was nice to look forward to that all day. I had a big and tasty margarita. The food was delicious. I am convinced, I could eat their food daily for the rest of my life and not get tired of it. We also had a good visit with my mom and Gene.

It was a good way to destress from the day. I am glad I took the day off. I was being kind to myself and I am grateful for that.