3/5/24

 I woke up at 7:07am today. That was only to find that TWO people had scheduled meetings with me at 7am and 7:30 am at some point after I went to bed. I was late to the first meeting obviously. 

I called the second person at 7:30 and she said that she thought her meeting was at 8:00 (because it was). I told her I would call her back at 8:00 but was now late to my 7:30 meeting. Ugh. 

I had back to back meetings until 9:30. I quick jumped in the shower got ready and did a 10:00 meeting. Then hopped in the car and drove to Ethan’s work for his 11:00 nephrology telehealth visit. Overall he is doing well with his kidney. He has been hydrating more.

I hopped back in the car and drove home. I had two more meetings. Ethan had come home from work by then. He showered, got dressed and we were off to Strong Hospital to meet with our new cardiologist. 

I felt so nervous and unsettled. Switching is so much work. Plus you have to build trust.  

While we were in the waiting room, a lady came out from her appointment and bee lined for us. She was spewing ignorance through her words about her visit. She was saying hateful things about the provider, repeating inappropriate phrases over and over and she was not picking up my body language of not looking up from my computer. 

She made me uncomfortable when she said she wanted to hurt the staff in the back. I told her not to do that. She would not shut up. I was dying a little as I hate this sort of thing. Just leave me alone.

We were FINALLY called into a room. I asked to speak with the manager. I let them know that this lady had a screw loose and was threatening to harm the staff. They sent someone in to collect more information.

We met Ethan’s doctor. He is a pretty funny guy. He had lots of dad jokes, which I can appreciate. We were there well over 3 hours. We are waiting to hear back, but Ethan will likely only need twice a year testing for rejection. Yay!

I am still not loving how long everything takes on the adult side. We have a plan for Ethan for emergencies. We have a plan for Ethan for communication.  He seemed like he actually cared and understood the PTSD aspect.

I warned him that Ethan doesn’t behave medically. 

Overall, I like Ethan’s new doctor. He admitted that he didn’t read Ethan’s chart and had me give a verbal run down of the chain of events.  He was asking me things that could be found in his chart. I of course left my phone at home and had nothing to be able to look info up. 

One question was “what was the name of the doctor that did Ethan’s surgery.” I could describe the guy to a T. But do you think I could recall his name? I said “I am sorry, he had at least 30-40 doctors during that time, including fellows and residents, plus all the nurses….” My brain was mush.

I am glad that we had the appointment. I can relax for a minute. Next up is hassling the renal team in Rochester to get that going. It is so much work.