Monday, June 10, 2013

Surgery Cancelled...or Postponed?

Well, Brynn's surgery was postponed for the second time due to a random fever and rash.  But I am still feeling like it's a blessing in disguise.  I still keep hoping that we can somehow escape surgery.  Especially when she had an episode with her left ear that was just like the problem she was having with the right ear.

Come on.  What are the odds that both ears would fail in the same few months time span?

I've done more research about that very question. 
It turns out that athough Cochlear Corp has less than 1% failure rate for all of their internal devices, Brynn's particular device has a 4.2% failure rate.  Basically, water leaks in and the electronic parts shut down as a result.  The explanations and details about the failures are kept at if you care to know more.  But the bottom line is this: even though her particular implant line has had more than the usual failure rate, 90% of the failures happen prior to 14 months post implantation.  Also, most of them happened in devices that were implanted during the first quarter of 2011 (a year after Brynn's implantation).  So what are the odds that three years after implantation that both her implants have failed in the same couple of months?  To further decrease the odds, they say the symptoms of implant failures is first, occasional cutting out of sound; and second, device shut down.  Brynn's implants still work--they are just painful somehow for her.

So what does this mean?  What are the alternative explanations to her troubles?  I've been told that there is only one explanation: over time, the fluids in the inner ear can change with diet, hormones, aging, or any myriad of things.  If the fluid changes, so does the way the electrodes in the ear react with the nerve.  So something that was fine a month ago can now sound really loud (adults don't let it get too loud and take themselves to the audiologist before it gets painful, but with kids it's a whole different story).  But even though that is plausible, it doesn't entirely match her symptoms.  Because when she reacts negatively, it's usually out of the clear blue sky, with no particularly loud or different sounds in the background. With her left ear, she always complained first thing in the morning so I can definitely see that it was uncomfortable to go from complete silence to a suddenly loud sound.  But the right ear was just so random!  And then the last time she ever wore her left implant, that one was extremely random too.  She just gets this white-as-a-ghost look on her face, with eyes as wide as saucers and then rips her ear off and starts to cry.

Trying to get her to tell us what's wrong is like trying to cut onions with a toothbrush: you don't really get anywhere but in the end you have a strong urge to cry!

Sometimes she'll just stare at us blankly.  Other times she'll simply say, "Don't ask me questions."  Yet it breaks my heart because she wants to hear so badly. It's just that her 4-yr-old understanding can't help her past her anxiety.

She's been totally deaf now for three days.  She is not at all happy about this.  She is extremely emotional and angry (she pinches Paul's arm, takes Heidi's toys, whines endlessly, and fights everything from getting dressed to eating, etc).  She is cranky and frustrated and it's rubbing off on the rest of us.

But yesterday, we were sitting at the piano and she said, "Mom?  I want to hear the piano." (it's amazing how well she talks even with zero hearing).  I told her we were going to fix her ears so that yes, she could hear the piano sometime soon--but does it count as a lie if I believe that's true without knowing how on earth it's going to happen?

None of the puzzle pieces seem to fit any of the experts' guesses.  So honestly, your guess is as good as mine.

We've tried to just turn down the volume on the implant as a whole but she hates anything that sounds different than what she's used to and has a complete meltdown.  As soon as we turn it back to its original volume, she does fine until the next white-as-a-ghost episode.  When we change the program, she'll meltdown with double the drama (changing an implant program is like moving the furniture around on a blind kid--they have to re-learn how to hear).

So we're going to try sedating her and doing ESRT (measuring brainwave responses to determine the loudest tolerable sound the implant should send for each electrode); and then we'll have to get an all-new program to determine the quiet sounds for each ear (if she'll cooperate, which is highly unlikely).  But then what do I do?  FORCE her to wear something I know she won't want to wear?  If I FORCE her, how do I know I'm not ruining her trust by forcing something painful? 

I can hear all my Deaf friends now: "Told you so.  Implants don't work. You should have just done sign language."  But I'm telling you, Brynn loves her implants.  She LOVES hearing.  And she has excellent speech--in fact, no one knows she's deaf unless we point it out.  She still prefers talking to us instead of signing, even without implants on.  She asks if I will give her her ears every day since being deaf (then breaks down in anxiety if I actually go get them for her).  So implants DO work (in the right cases); but I'll agree they definitely don't come without a few challenges.  One thing I wish to thank my Deaf friends for, though, is giving me the proper motivation to teach Brynn sign language in addition to speech.  Let me tell you, my life would be SO miserable right now without her current sign vocabulary!

Well, I really should stop rambling.  I guess I am just going on and on because I have no idea what I should do.  Wait?  Pray?  ESRT?  Maybe surgery as a last resort?  One thing is for sure: take a day at a time...and keep my chin up with the ultimate expectation that it will all work out according to the best.  In the meantime: sign, sign, sign.


Unknown said...

You are a superstar at keeping your chin up! We will keep you in our prayers.

P.S. I loved the cutting an onion with a toothbrush metaphor.

Alyson said...

My heart is with you! You're walking a fine line, keeping Brynn's spirits an hopes up while keeping it real, that there might have to be another solution. I really hope/pray that everything will work out the best and least invasive way possible, so that Brynn can continue to develop, and hear everything she wants to.

Tricia said...

Oh Natalie! I'll pray that answers can come to you and definitely peace for Brynn. You sound so strong! Good luck. :)