Good Friday brings good news

We found out about two weeks ago that my son had some serious hearing issues. One ear was said to have severe to profound loss and the other ear was said to have moderate to severe loss. What this means is he can’t hear much that is said with one ear and he can barely hear a little that is said with the other. One ear was permanent and the other ear shows mixed causes so it may well also be permanent. As mentioned then, this was all discovered when my son had an ABR (auditory brainstem response). An ABR is done under general anesthesia. It takes a couple of hours and measures what happens to sound after it goes into the ear. I have wanted this test for almost two years now but noone else seemed to agree with me that it was necessary, until we saw the doctors from Children’s Hospital of Philadelphia (CHOP).

When I was first told my son couldn’t hear I felt like someone punched me in the stomach and it took my breath away. When I got in the car to make the almost two hour ride home I just cried. For the first two days I found myself unable to concentrate and didn’t do much. After that I cried on and off for another week until I finally kicked myself in my own ass and pick myself up.

We had agreed with the audiologist that we’d get hearing aid molds made and they’d put some loaner devices on them so we could see what would work best for my son. I sent the money to CHOP to have the molds made because it was easier than trying to find someone here that would make them without costing an arm and a leg.

On Wednesday, three days ago, I got a call from the billing coordinator at CHOP informing me that there was some sort of problem with the insurance and not only were they denying future services at CHOP but they were also denying this last round of services which were really expensive. And the insurance company wanted us to start all over again with one of two new providers, one in Delaware or one we’ve seen previously. CHOP had already appealed and their appeal had been denied. I was advised to appeal it myself. Once again I felt like I’d been punched. Of course there was more crying, because that’s just my nature. I do not understand why everything must be a battle. It’s so mentally and emotionally draining when you constantly have to fight for everything.

I immediately started making phone calls to a department within the state regarding managed care, the insurance company and CHOP again. I got a call back from one of the nurses at the insurance company who asked me a lot of questions and left me with the impression my appeal was not going to be successful. I told her my son had already been to one of the providers they said he now had to see and that’s who referred him out for more testing. I offered to fax her that report. My fax cover turned into a two page single spaced letter, detailing our quest (which started last April) to confirm any possible hearing problem.

Yesterday I got a call from CHOP with the billing coordinator who was literally yelling with excitement that the decision to deny payment  for past and future services had been overturned and my appeal had been granted, at least until May. I thanked her and she said they believed it had nothing to do with them and everything to do with my determination, passion and advocacy. (She also told me if I ever wanted a job she’d hire me in a minute.) Usually my Mom has a lot to do with getting things to happen but she was out of state this time, so it wasn’t her. I think it was due to my efforts along with some of the CHOP staff, and my grandma up in heaven just trying to help me out. (She had a hearing problem too.)  However it happened, I am thankful we have a little time to get a treatment plan in place until we can hash out with the insurance company what’s going to happen with future care. I feel like we can have Easter without this giant weight hanging over us now. Which reminds me, I’d better go boil some eggs.

Category: Family, Health