5/26/21

Ethan got to sleep in this morning. I took a moment to have coffee in the back yard. The air was warmly and breezy. I had no idea what sort of crap was waiting for me to step in.

I became very aware, very quickly that I am hitting my limit.  I sat down to write this epic bank note that was strictly all facts and no snarkiness.  I did have to read it and reword a few snarky things. That was difficult. I understand it is part of the process for SSI and they deal with people lying and stealing everyday. I do feel like I have to go out of my way to prove my innocence that I am not fraudulent. 

I understand there are fraudulent people out there. I just don’t understand the how? I basically have to submit a note with supporting documents, possibly my left ovary (kidding but I wouldn’t be surprised) and discharge papers. This process started in March. I can’t imagine how people navigate this that are ill and alone. 

I was getting mad at the situation. I typed the letter with a bit of fury. My fingers just tap danced away explaining our situation.

I then got a call from NYC that the insurance company denied Ethan’s medication coverage. This was after our transplant doctor presented that Ethan’s LIFE SAVING medication is sub therapeutic and the treatment is not working the way it is supposed to. He isn’t getting the coverage he should be. If he was switched to a different medication it would offer protection while being kind to his failing kidney. The medication was still DENIED!

We discussed alternatives. The main solution was switching Ethan from twice daily medication to every 8 hour dosing. This would require us to set an alarm for the middle of the night, every night. Timing is everything with this drug. Wake your healing, fatigued, undernourished, kid suffering from end stage renal failure up during his precious hours of rest. Raise your hand if you could get excited over this. If you raised your hand, kindly punch yourself in the face for me. This is a hard no!

I offered to pay out of pocket for the medication. They strongly STRONGLY advised against this. They were confident that there will be away around this and that purchasing it outright was a terrible idea. I trust their advice.

I called the insurance company to make sure I got my facts straight. I didn’t understand. The conversation went something like this:

“You approved to pay for a heart transplant.”

“Yes”

“You approved the months he was critically ill in ICU and the hospital.”

“Yes”

“You approved then inpatient rehab.”

“Yes”

“After months of keeping this kid going and covering his treatments, now you don’t want to cover the medication that can keep his heart healthy?..........I don’t understand.”

.............

There wasn’t really an answer for this. But I was told I could file for a “fair hearing”. I asked if that was something we could do this afternoon since I have weeks worth of sub therapeutic levels to support his current treatment isn’t working putting his life at risk.

“It will probably be more like July or August.” She said

What do I even do with that information? 

“Ok, so let me make sure I understand......he will inhumanely have a slow death of his body rejecting his new beautiful heart, for a few months, until the hearing. Would that be ok for you to accept for your loved one? Also is it more cost effective to end up potentially going through ANOTHER heart transplant because of the delay in treatment cause irreparable damage to his existing heart?” 

I wasn’t raising my voice. I get it was a fair question. I know this person doesn’t make the rules. She actually was understanding. I ended up ending the call politely without setting up a hearing. Unbelievable.

I was shaking mad. Tears welled up in my eyes. Ethan came over and gave me a hug. “It’s like they just want me to die.” He said. This made me mad. Mad that he thought this. Mad because they were responsible for making him feel this. This is going to be one fight that they wish they never picked.

Nyc called back and said they were going to try some different things to get this medication for us. They are totally on our side. To buy some time, they are going to prescribe a different medication where the side effects is raising his therapeutic levels. A bandaid until we can get this approved. At least it will keep Ethan’s heart safe.

I enlisted some help from a case manager. She started fighting this insanity with us. She involved a medical director and we’re going to work on some things for us.

Then I opened the mail as I processed everything. One of the letters was a note, from the insurance company stating that the night Ethan was hospitalized after he had his first seizure, was not going to be covered at all because it didn’t meet the criteria for the required tests and symptoms to facilitate an over night stay. 

I was advised that it was against medical advice if we did not spend the night (which would have put us at jeopardy for the insurance company covering any incidences pertaining to this in the future). I called the insurance company back. I explained our situation and that Ethan was critically ill...blah blah blah....they said they weren’t going to pay it and to contact the provider.

I called the hospital and spoke with a nice woman who validated that “this is messed up”. She was nice and helpful. She said to ignore it and Strong would take care of the supporting documents needed to help get coverage. Hopefully it works out.

I then went into work for a few hours. I feel drained but better than I did earlier today. I had some bright spots this afternoon.

I got to see a dog today at work that wasn’t doing well 10 days ago. His mom was super sweet. We changed up some things with his home care. When he came in today, he looked dapper. He had a sparkle in his eyes. His coat was shiny. I was so pleased that he was feeling so much better. That made my day. If you can make a difference in one person’s day, you have succeeded.