5/25

I was “out of sorts” this morning. My head was swirling with “don’t forget to do this today” and “don’t forget to do that today.” I was over tired and under caffeinated. Not a good mix. I was able to do auto pilot things, but any thinking was super foggy for me.

We arrived at dialysis and my BFF nurse right away noticed I was “off”. I really tried to focus but kept making stupid mistakes. I couldn’t read and make sense of the directions. I was fumbling and just trying to get through it. I was strongly fighting back tears due to frustration with myself. He was kind. He insisted sometimes the care giver needs care too. Those were the truest words of wisdom I received today. I did receive other true words at work today and they were “don’t touch that without gloves. It smells really bad.” True indeed!

I was upset with the conversations I had with Ethan last night and this morning. His recounting of the torturous ordeal getting the leads glued on his head. He was mentally and emotionally down because it traumatized him. When he is traumatized, I am traumatized. I hate it. He was still traumatized when he woke up and stated that he will NEVER do this again. So they got one shot to get it right.

Ethan did vent that he felt this latest experience of getting the leads glued on his head may have broken his spirit. Combined with his extreme fatigue, he was feeling broken and down. I can handle most things but I struggle when I can’t make my loved ones happy.

This all played into my brain fog. Thank god my BFF dialysis nurse recognized it. He was right. I needed the time this morning to recoup. His nursing skills turned into therapy skills and between he and I, Ethan felt comfortable to open up and confess his frustrations. It was another epic nursing moment. 

Sometimes we are reminded that some of our brightest spots are all the wonderful people that have been placed in our lives and cared for us and helped us.

I watched something beautiful happen. As Ethan shared his feelings with us, we talked. We laughed and shared stories and laughed some more. Showed a few YouTube videos of Paul being pranked. Laughter is truly the best medicine. At the end of dialysis therapy, Ethan shared that our BFF dialysis nurse had made his day better. He made mine better too.

We went home and I had to go to the bank at the request of the SSI office. They needed a bank letter clarifying some things. We have been working on this application since March. I went in the bank and told them what I needed. The lady looked at me like I was speaking a different language. She didn’t even respond for a minute. I looked behind me to make sure the bank wasn’t being robbed due to her lack of response. “Can you do that?” I asked.  

She went on the say that she could not write that letter and that they would have to charge me $20/hour to “investigate” it and that it would be better for me to write the letter and they could notarize it. What a wasted trip. I hope the SSI office will accept this. She even checked with her manager to make sure. 

I was able to schedule a few more appointments for the next few weeks as well as get involved with facilitating the insurance company to approve the medication Ethan needs. Apparently Ethan needs 5 mg and the insurance company approved the 4mg tablets but not the 1 mg tablets. What? Makes no sense. So we will continue to March forward in this battle.

Then Ethan and I went to his neurology appointment to get his glued leads removed. He fell asleep in the car on the way there. I felt like I did when the kids were small and napped in the car. I took corners slow, didn’t slam on the breaks. Nice and easy. Don’t wake the baby.

Removing the leads was much better than the described   Application of the leads feeling like “multiple stab wounds to the skull”. Nope. That sounds horrifying. When we got home, we had to soak his head in baby oil for 10 minutes. What a mess. Then scrub his head.  We didn’t get all the glue off but we came close.

I then left for work for a few hours. It was busy. It is my slice of normalcy. I am tired but in a much better frame of mind at the end of the day. 

On my drive home, the sunset was beautiful. Natures finer pieces of artwork. I made it home in time to help Ethan up to bed. ❤️