We had to wait over a month between finding out she had lost her left ear hearing and getting a MRI and CT scan of her ears. Funny side note, the MRI tech told me they would take a few pictures of her brain while she was out as well just to "check" things. I for a real kick out of the report stating they didn't find anything out of the ordinary in her brain scan (like say, a stroke!). Anyway, Her ears are apparently the only thing she has that screams CHARGE syndrome. She has the classic lack of a vestibular (inner ear balance) system. She also has only mostly formed cochlea (the snail shell looking part). Most people have 2.5 solid swirls. Emmeline has as the ENT put it "2 and a squeak". There is also a very small vein in every one's ears that is about the size of a mechanical pencil lead. The surgeon said he saw one once that was the size of an eraser. Emmeline's is the size of this pointer finger. Also, she has no right jugular vein in her neck. So basically the vein in her ear is functioning like her right jugular. Weirdo.
So what we found out was, she is eligible for a cochlear implant. At first I thought, cool, she'll be able to hear. The next day I thought, wait, maybe this isn't right. The next day I thought, cool, she'll be able to hear. The next day...you get the idea.
Don't get me wrong the technology is AMAZING and way beyond anything I could ever dream up. But it's also scary. First off they would have to shave the implantation site. Silly I know but we have never cut her hair. Ever. I could just cut it before hand but I don't like the idea of doing it when someone else says I should. It's the "I'm in charge" in me. I'll get over it though. What choice do I have. "No thanks, I don't want my daughter to hear because I like her hair"?!
There are other risks that are totally out of our control so I'm trying to let go of those but they linger. I am SUPER not keen on the idea of someone peeling back my daughter's scalp and ear and putting some BORG in her. My very cool sister Katie says it will make her "different like a friggin super hero" and that sounds pretty awesome.
A big drawback for me is that even though she doesn't have much hearing in that ear right now, after the CI she probably wont have any so if it doesn't work then she will be dark on the left side forever. Not really a choice I want to make for her. The problem is if we wait for her to decide the benefit goes drastically down. Right now her auditory nerve has been stimulated to a normal hearing level since she was a baby. If we wait to put it in the brain will start to shut off the auditory nerve to that ear.
Either way we are in kind a time crunch since it will take at least a month to get insurance approval and then to actually get the surgery. Then another month before we can get "online" and then a year of intense rehab. Did I mention Josh getting ready for his dissertation performance? Yeah not the greatest timing since whenever I talk about something medical he gets this glazed look in his eye. I think his brain might be full. So that mean my least favorite thing. Waiting. I really need tons of mental support and "yes this is a good decision" to go through with this so I would rather wait a couple weeks and have that support then try and go this alone. I just wish Emmeline could tell me. She trusts me and I REALLY don't want to betray that trust.
The external part. It is help on via magnet under the scalp.
The part in her scalp. It sends signals via those little wires into her cochlea (snail shell) which then sends it to her brain
picture of where everything goes.
4 comments:
Great job describing everything. I can only imagine the burden of making such a life changing decision for someone else. I am just really grateful that you HAVE a choice. It would be really sad if only the rich could get this device. I know waiting is like your LEAST favorite thing but this will be so much easier to deal with when you and Josh can do it as a team. You are wise to wait even though it is painful. Will they have to shave the whole side of her head? Yikes! Knowing you though you will come up with some clever way to make it fun. You are just darn AMAZING!
Love you! Mom
Thanks! It's hard for me to know if what I am typing makes sense for someone who isn't sitting there in the appointments with me. They will probably need to chave most of the left side but not all of it ( I hope). it just needs to be shaved to cut open and put in the implant. you can google pictures but do so at your own risk. it's kind of scary stuff.
Oh man, that's tough. Just when you put one thing behind you, another major decision must be made!
It's never ending. Like I needed to tell you that though.
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