5/24

What a long day today has been. The day started off right with my dialysis BFF. I was able to read through the instructions and do them as I went. I did pretty goodish but still am not quite ready to fly solo.we left dialysis around noon.

Ethan and I had lunch and then his next appointment started at 2:00. We both didn’t really quite know what to expect. I had an idea of how it was going to go and it was a bit different than I imagined.

The lady that was working with us was a bit rough with Ethan. I didn’t notice it at first. I did however see Ethan holding his fist closed tightly, a move he does when he is really upset. I keep asking him if he was ok.

In the middle of that going on, I got a few phone calls. One was from Ethan’s transplant doctor. She was nice enough to call and check in with us. I had been emailing her with updates on how Ethan is doing. She was also on “vacation”. She got back to me each time even though she was dealing with a family dilemma.

We talked about Ethan’s extreme fatigue, vomiting etc. the other two phone calls I didn’t answer because I was on the phone with her. One was from the pharmacy saying our prescription was again denied. The other was a message from the insurance company informing us our prescription was denied. This resulted in more phone calls, frustration and emails. Not sure how tomorrow will play out. It’s frustrating but we will play the game just as hard because I don’t like losing.

While I was driving home Ethan was completely upset. He described the hour and a half long appointment as sheer torture. He described it feeling like he was stabbed in the skull multiple times. He then shared that she was rough with him and was jerking his head all around. It was hurting him. Ethan was frustrated and upset because he was not prepared that this appointment was going to hurt as much as it did. He felt like he was being tortured and he was sick of it. 

Feeling helpless, I let him vent. While working through his frustration, I got another call from the hospital to schedule an appointment for Ethan. I couldn’t take it while I was driving. Plus how could I say to Ethan politely “I can see you are visibly upset... hang on let me take this call.” 

I called when I got home and it was “after hours”. Eye roll.

I stopped home around 4:30, dropped Ethan off and changed my clothes to go into work. I stopped at the pharmacy on the way and spoke with a worker there trying to figure out exactly what we need to do to get Ethan’s prescription approved.

Then into work until a little after 8:00 pm. It’s very tiring. For both of us.

Ethan went to bed. I am also ready as well. We made it through another day. Tomorrow is a new day.