3/9/22

Ethan has been working for a while. He needed help with some paperwork and so I was on speaker phone with him and his boss. Normally I would have had Ethan just deal with getting the info he needs on his own, however, today I was called out of convenience. 

While I was talking in the phone to Ethan’s boss, I remembered a time, I believe it was late December of 2020, when I so terribly missed hearing Ethan’s voice. I missed seeing his non vacant eyes. I was unsure of what his future was. To get to see him thriving at work, is a gift. I was glad he was filling out the paperwork. I was proud of how far he has come.

We had another appointment with NYC nephrologist, Ethan’s kidney levels are still high. They crept up a little higher this week because he wasn’t drinking as much. He can’t fake his way through that. It is an adjustment going from having significant fluid restrictions to having to drink your brains out.

We still go for our weekly blood draws. We are still trying to fight with insurance for the one medication. I also got a notice from the insurance company that a visit from July 2021 was not going to be covered by insurance because we never got pre-authorization. This was the first notice I received, but due to it being longer than 180 days, I could not file an appeal.

“So….what should my next move be?” I asked the lady.

“You will just have to pay it out of pocket.” She said

I paused a moment as I felt this was a bit sneaky and unfair. I just don’t understand the process. Still! I get frustrated when I can’t understand something.

I started asking more questions. Turns out, we were not getting this covered because we were “out of network.” Why were we “out of network?” Because we were doing visits that we were told to go to NYC because they don’t have a pediatric transplant team in Rochester. Seriously????? We are going in this damn circle again.

I got talking to the lady and got her to loosen up. She ended up being able to submit the claim for another appeal. I was so thankful she helped me. So now we wait to see what happens.

I was able to schedule a bunch of appointments for mostly Ethan but myself too. We still need to go to the lab on a Wednesday morning to get Ethan’s ACTH stim test done. This is to make sure the mass in his head isn’t growing. He doesn’t have any of the symptoms (knock on wood) so hopefully that means good news.

I feel like I accomplished something today, so that is good.