10/6/21

 

So we got a letter in the mail from New York State of Health. It was to deny us of coverage for Medicaid. 🤬.  Are you kidding me? I has a swirling of anger and frustration within me.

Within the letter is states that if you have any questions call such and such phone number. So I did. The first time I was on hold about 15 minutes before I spoke to a live person. She said “hi this is Amanda.” And then we got “disconnected”. I had to call back and go through the whole damn process again.

When I finally got a person on the other end, I explained the letter that I received. I also explained the situation and how we are waiting on the approval that Ethan is entitled to. The lady was very nice and really seemed to feel for our situation. She started “looking into some things” and then told me that we were approved for Medicaid…..IN APRIL….. at the county level not the state level.

IN APRIL………..what?????????

What does county level mean?

I know enough to ask questions, so I asked what that meant. Apparently, if you are approved on a county level, that is better than a state level as it covers more (from what she told me).

“Why did I get this letter clearly stating we were denied?” She had no answer. She thought maybe because he isn’t considered a family of one and our tax status was incorrect on our application?

She saw that they had mailed out a Medicaid card to us as of yesterday. I paused when I heard this. “If we were approved in April, why would a card get put in the mail in October? Is there that much of a delay usually?” She said no and had no explanation for me.

She also shared that Medicaid isn’t accepted in the 5 Burroughs of New York City. What the hell? I also don’t think this is accurate because it was the financial team urging us to apply for Medicaid.

I decided that I will call back tomorrow and see how f I get the same answer or a different answer. I want to believe we got approved but we have a letter saying we were denied. 

I also go a call from Ethan’s transplant coordinator. My case was presented a few weeks ago and approved for transplant. Ethan’s case was presented on Friday. I didn’t know it was going to be presented but his case was also approved which was the second to last major step prior to scheduling. Last is securing insurance which I am struggling with.

I feel like I need a specialized insurance college degree to understand all of this. It makes me feel really dumb that I don’t know this stuff. In some way I feel like I am failing Ethan because of my own ignorance. But I know that deep down, I am not a dumb person. I can’t be the only one that has struggled with this. It seems no matter who I ask, I always get a different answer. 

Tonight was dialysis. It was a 5 hour session from start to finish. As I was hooking Ethan up, he had his shirt off. His scars look good. He is gaining muscle mass. His arms are getting bigger. He looks stronger. 

He put out another YouTube video today. Click this link to watch: https://youtu.be/bX4yY5Kxhi0

Ethan putting out a YouTube  means he is able to do more, film more, and juggle this schedule with his college courses and co-op. This is amazing. We have come so far in a year.

Our dialysis session was uneventful. Uneventful except when I called FedEx to schedule Ethan’s lab work to be picked up tomorrow. I had to hang up the first time and trouble shoot the alarm. As soon as the alarm cleared, I called again….only to both troubleshoot the alarm and schedule a pickup with someone I hardly could understand. I even got flustered with my home address and gave the wrong pick up address. Luckily Ethan helped me out with that. Ha ha.

It seems like everyone I am around is getting sick. We can not afford getting sick. Not with our trip to New York City coming up. I can’t have Ethan feeling sick for his cardiac cath and biopsy. It is frustrating that not everyone takes responsibility and puts a mask on when they are feeling ill. I know that not everyone has a critical situation like ours. But to me it seems like common sense during a pandemic that if you don’t feel well, put a mask on and protect those around you. I am so thankful I chose to vaccinate. I can’t imagine being in our situation without it.

I also realize I can only control myself. I can only control my actions and reactions. So I will mask up for now to keep Ethan safe.