Frustrating But Worth It

All of Lily's CI candidacy evaluations are complete and the CI team at NCH (Nationwide Children's Hospital) has decided she is a great candidate for cochlear implants. Very exciting! The frustrating part of all this is trying to get a surgery date and figure out how the surgery is going to be paid for.

As I mentioned in my previous post, we have BCMH funds available to us. I recently found out that BCMH has approved Lily for bilateral cochlear implants. So we were told in May that the surgeon would perform simultaneous bilateral (two ears in one surgery) CI surgery when Lily is 8 months old with the BCMH money. A week later we were told that the surgeon will only do one ear with BCMH money at 8 months and do the other ear in November when she is one year old with money from insurance. I was disappointed, but moved on and got excited about having one ear implanted on July 1. My baby would be hearing before the end of July! We had all of our appointments scheduled for pre and post surgery and mapping. Her equipment has been order and we're all set for surgery in a few weeks. Well. . . last week I got a call that our insurance denied Lily's surgery because she is under 12 months AND that BCMH will not pay for any surgery until Lily is 9 months old on August 11. Not a big deal, just one month at 10 days later right? WRONG! It is a big deal. It is so frustrating to be told one thing and get your hopes up only to be told something else later. So I'm told that Lily will get one implant August 11 and the other implant the week of her first birthday.

With all the stress of the end of school last week, being told one thing and then another what seemed like 50 times, and starting the appeal to insurance, I sort of broke down and lost it. I cried, I was angry, I was sad, I was frustrated, I was tired. . .I was hopeless. I thought we would never get through this. So I called and spoke with Lily's surgeon and explained my feelings of frustration and my STRONG feelings that we should have access to the BCMH money for TWO implants since that is what we have qualified for. He said he would discuss it with the appropriate people and get back to me in a week or two.

I was still feeling pretty hopeless, so I started my appeal letter to the insurance. I feel like I'm back in college writing a research paper. I've gathered all of this research demonstrating the benefits of implantation under 12 months of age. I've also gathered some research demonstrating that anesthesia complications in infants 2 to 12 months is no more risky than it is in children aged 1 to 5 years. I've got a rough draft letter finished.

I needed a break from thinking about hearing aids, cochlear implants, surgery, insurance, FDA, etc. so Lily and I joined some family on a trip to the Columbus zoo yesterday. We had a great day and I didn't think too much about all that was upsetting me. I got a call yesterday from Lily's surgeon. He was able to get back to me in 2 days rather than 2 weeks. He explained that he met with the medical ethics board and the head of BCMH and they decided. . . to do SIMULTANEOUS BILATERAL COCHLEAR IMPLANT SURGERY when Lily is 9 months old! I'm SO excited! Now Lily only has to have one surgery and she'll still be hearing before she is one year old. So now her surgery is scheduled for August 11. I'm praying that nothing changes. I'm still going to file the appeal with the insurance in hopes that they'll reverse their decision and the BCMH money can be saved for others who may need it.

This whole CI process has been hard on me. But I know it will all be worth it the first time my sweet baby turns to the sound of my voice. I was reading my devotional and the author wrote something that I really needed to be reminded of. He wrote, "God never said the journey would be easy. . .He just said it would be worth it." That's what I'm holding on to right now. I think there are going to be MANY bumps along the road of raising a deaf child and the journey will be hard sometimes and sometimes not so hard. But at the end, it will all be worth it.

This baby is definitely WORTH it!