Monday, February 9, 2009

breaking up is hard to do

i've been a bit behind on updating little m's cochlear implant surgery progress...so let me catch you up to date!

as most of you know, we had picked our surgeon and hospital back in october, and we even had a surgery date for halloween, when at the last minute our insurance company denied the surgery until she was a year old. (for thoughts on why it matters to have her surgery earlier rather than later, go to this earlier post or here for an overview.) the amazing let them hear foundation began advocating the insurance company on our behalf in the hopes that little m could still get her surgery before she turns one in april. our lawyer at lth, amy, warned us not to have unrealistic expectations. she said our expectation should be that the surgery would not happen before april 2009, but that we could at least fight the insurance denial in the hopes:
  • of the very slim possibility that blue cross/blue shield would relent and actually approve little m's surgery before she turned one.
  • that our case would down the road help other babies who need ci's before they turn one. hopefully the more cases that are brought and overturned, the sooner the fda will adjust the guidelines for cochlear implantation + therefore the insurance companies will approve these surgeries. if other families don't have to go through the roller coaster of emotions that we've had to, then this whole process is worth it, as much as it sucks for us.
children's hospital oakland's audiology department had already had some shake-ups in 2008, but we really liked everyone we had worked with there, and we loved how close it was to our house. sarah, our audiologist (and the person who first told us that little m was deaf), was consistantly super accomodating to us and was great about keeping us informed of all of the changes in their program. BUT. in between october 31st, when our first surgery was scheduled, and december, when our first insurance appeal was denied and we went for the second appeal, our surgeon who we were using at children's hospital moved across the country. ay. when someone is cutting into your lil' baby's head, you kind of want to make sure you know who is doing the surgery. first we hear it is going to be one surgeon, and then another surgeon, and finally  we hear really great and unexpected news! children's hospital is going to have dr. roberson - the best cochlear implant surgeon in the bay area be their new surgeon. we were thrilled that in this whole messy, complicated process that cho's new surgeon was dr. roberson. 

i'm already making this post longer than it needs to be (i know, shocking), but basically we found out a couple of weeks ago that at the last minute, for whatever reasons, dr. roberson being the surgeon for children's hospital fell through. all of a sudden they were going to have a totally different surgeon who we had never even met. again, let me remind you that whatever surgeon we go with will be opening up sweet little m's head.

it may seem like we are making a big deal about who we pick to go with for this implant surgery, but in addition to the actual surgery, we will be working with an entire team of people for an extended amount of time. little m will have to go in many times to get her ci's mapped (basically the levels set and adjusted), for speech therapy, and follow-up. it isn't just a one time kind of thing.

in the end, we decided there were just too many changes at children's hospital for us to emotionally handle. we needed to pick a team that was currently in place, and stable. as much as we love everyone who we worked with at children's, we are now schlepping across a bridge to palo alto to california ear institute and the let them hear foundation (they do advocacy and also audiology + a bunch of other stuff.) when i emailed our audiologist, sarah, i kind of felt like i was breaking up with the hospital. "it's not you, it's me" sounds as lame, by the way, when you are breaking up with a medical facility as it does with a sweetiepie. 

we'll see what happens down the road, but for now we cant wait for little m's surgery!

it may be soon...

3 comments:

  1. Oh, I SO know what you're going through. Ben was implanted at 8.5 months at NYU, but BCBS gave us a battle first. E-mail me (wilsonjATfredonia.edu) if you want the full story. If nothing else, it's proof positive that BCBS has in fact paid for implantation at less than 12 months. Anyway, I encourage you to keep fighting for it -- the earlier the better.

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  2. I truly pray that you get your surgery approved. I would not want any other mommy to go through what we went through with Ethan. He was implanted just two months before his 3rd birthday and it's been glorious since that day.

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  3. Best of luck with getting your surgery performed sooner rather than later! I'm thinking of entering a Transitional Audiology Online educational program and am inspired by stories of successful implants. Please keep us updated.

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