11/17/21

I heard back immediately from Ethan’s NYC nephrologist this morning. She is not pleased with Ethan’s CBC either. I had emailed her to keep her in the loop regarding his results. I understand she has many patients, but mine is the most important to me. So I just scooted him to the front of the line with an email for her to review his results.

Now we need to repeat labs next week locally. Whatever it takes to get him in the best shape for surgery. 

I am finding it stressful that I am going to be at the mercy of others. I have been the CEO of Ethan’s medical information and I am afraid something might be missed.

I found a little more information out about the Medicaid travel program. I learned that our social worker at the NYC hospital referred us to our social worker at our dialysis center. I contacted her, which actually was our insurance coordinator because I can’t keep everyone straight. She referred me to our new social worker because our other one left. I found a number after digging online that I called and it turns out that a social worker doesn’t fill out the form at all. 

This was a particularly entertaining phone call as there was a delay. I didn’t realize there was a delay right away. I would say something and there would be silence. Kind of a longer silence than was appropriate. Then I would say “hello”. Just as I would say hello, he would start talking. I would miss the beginning of the sentence and then halfway through his sentence he would receive my “hello?”, we would re-establish that we could hear each other. It was awful.

He said we needed a healthcare provider to fill out a form 2020 for travel. I asked a bunch of questions and then contacted our transplant coordinator begging for her to help. She was awesome, knew about form 2020 and got it filled out and sent right away. Phew! That is a big weight lifted off my shoulders.

Ethan is really dragging energy wise. He is feeling so tired. Damn anemia! 

Avery had a doctor’s appointment. Her doctors appointments are a breeze these days. Except I had to pause when they asked me her birthdate because I am so used to blurting out Ethan’s. She had to have her blood drawn too. She was far better of a patient than the girl next to us. That girl was hyperventilating and crying. We were there 6 minutes. This girl went in before us and they hadn’t gotten blood from her yet. Yikes. I told Avery I would have been so pissed and embarrassed if she acted like that.

I got a call from a different social worker in NYC. She said the 2020 Medicaid form was the wrong form I needed to have filled out. So she is going to look into it and see what we actually need. Darn! I thought I had it figured out. ☹️

All in all, I get we made progress today. Back to work tomorrow.