5/18

Dialysis training started bright and early this morning. I felt a bit tired. I was paying attention but just felt tired. Ethan got his treatment. His tongue is still so sore. He is getting frustrated with it.

We returned home and I went into work for a couple hours.  How is it that I am not working that much, but still feel so tired?

I had a lady call to set up Ethan’s MRI for his seizures. At first she was not going to talk to me because Ethan is an adult. I assured her I was his advocate and that the reason my phone number was on file is so that they could talk to someone that knows what’s going on.

She was calling to set the MRI up at the hospital. Because it was at the hospital we would need yet another damn covid test. Stupid covid. 

When I inquired about having it done at an outpatient center, she said that because he had an ICD he had to have it done at the hospital. I politely let her know that his ICD was removed in November 2020 when he got his new heart. I quietly wondered why this information was not in his chart.

I feel bad for the people that call to schedule these appointments. She is just trying to do her job. The lack of communication comes from beyond yet falls on her shoulders.

She also let me know that they were going to use contrast for the MRI.  I had asked if this had been approved by his nephrologist as he is in end stage renal failure. She did not realize this diagnosis. 😳 I also asked her if we needed to time the MRI so that he can immediately go for dialysis as I had thought I had remembered that another time it was important to do dialysis right after contrast to clear it from the body. She wasn’t sure and didn’t know.

We did not schedule anything and I had asked her to find out those answers for me. What if I had not known to ask those questions? I had wished there was more communication or access to Ethan’s chart so that these questions would not need to fall on my shoulders. I wish there had been a note that discussed scheduling around dialysis. I know we will get there but I was annoyed.

I am finding that I am having some terrible conversations in my brain about things that happen but try my hardest to stay as kind as possible. Some days it is harder than others. Maybe this is why I feel tired. It’s like exercising, but just inside my brain. Ha ha. 

Ethan had a little bit of free time today before physical therapy. Physical therapy kicked his butt. He got home a bit after 6:30 and then worked on some homework for a while. He is ready for bed but is staying up tot ale his 9pm meds.

My bright spot today was the beautiful sunshine and weather. Wow! The sun was like a warm, friendly hug today.