2/17/22

This morning I woke up 2 days behind on paperwork. We received a notice in the mail from insurance stating our NYC hematology appointment from 6/21 would not be covered because it was out of network. A grievance level 1 had already been filed and denied. We are one to a grievance level 2. The insurance company wants the pediatrician’s office in Rochester to be involved because Ethan is under their care.

Now Ethan’s pediatrician’s office referred us to Strong cardiology, which referred us to Pittsburgh for transplant because it was closer. Insurance told us we had to go to NYC for transplant because we had to stay in the state. This is the same insurance that then denied us coverage in NYC a few weeks later stating we were out of network in NYC even though that is literally where they told us to go.

The transplant team is the end all, be all, mighty rulers of Ethan’s medical care for the next couple of years. his transplant team sent him to this particular hematologist, because they needed a close eye on Ethan's changing hematology values.

So even when you follow the rules set forth by insurance, you can count on the headache of endless wasting of your time dealing with their crap. I imagine someone sitting in an office that approves charges just randomly denying everything because they can, but clearly not knowing this kids medical journey.

Luckily, Ethan's pediatrician is flexing their muscles and going to bat for Ethan, even though they had no real involvement in this hematology referral. Thwy are my super hero.

FINALLY got my paid family leave check that was sent out on 1/28. woo hoo!

I got a kickass pedicure and dinner (with a huge margarita) with a kick ass friend tonight. it felt so good to do something normal. however, a pedicure for me is very fancy. The last pedicure I got was last may, with Avery.

My bright spot was my evening for sure!!!!!