Saturday, July 13, 2013

Happy Ending, New Direction

If you don't want to read this whole post, I'll just summarize here. Soon (hopefully tomorrow), I'll write about the emotional battle we had to fight through this ordeal.

What Was Wrong?
After a billion diagnostic tests (okay, there were only 3 big ones, but it FELT like a billion), we couldn't find anything wrong with Brynn's implants. And since the left and right ears were both having the same trouble, I felt like a common cause must be at the root. I was worried it might even be her nerve or something that we simply couldn't fix.  Suddenly, I realized what it may be:
the implant has a setting where the recipient can hear a mechanized "beep" when the battery is low or the program has changed. We usually have that alarm off, but I discovered that somehow the setting was turned on. Combined with the fact that our batteries are 3+ years old (a year longer than the average lifespan), I realized that her batteries simply weren't lasting a whole day. She was hearing a "beep" as they got low and to say that Brynn loathes "the beeps" is an understatement. So, the good new is: no surgery! The bad news is: this is still a guess of what may be the trouble so this might not be over.

Wearing Them Again
Getting those implants back on Brynn's head again was a massive challenge--one that we're still not entirely through. After her long medical history, the poor thing has the anxiety level of a traumatized war veteran. And during the 5.5 weeks she was totally "off the air," her speech has gone down hill a great deal. So we're not out of the woods yet but as of yesterday, she was wearing her left ear all day on slightly less than full volume. She was ecstatic. She kept saying over and over throughout the day, "I can hear that!" She ran to the piano and played for a while, brought me several books to read, and wanted to call Daddy on the phone. She refused to let me take it off long enough to comb her hair and was hesitant to let us take it off at night. Oh! I am so glad she is willing to wear it again!

Our New Direction
Even if we do get both implants back on at full volume, though, we have still decided to turn a big corner anyway--it's time to go to the LDS Deaf Branch (a small church) in our area. Let me just say that there is nothing like trying for over a month to communicate with a deaf kid who doesn't know the Deaf's native language. I mean, she has a lot of vocabulary words, but as a language...not even close. If this experience has taught me nothing, it is this: NOW is the time to make good on that commitment we made so long ago--that we would give her the ability to choose the Deaf or hearing world as an adult by doing our best to give her both languages as a child.

So that's the short version. Here's some of the details for record's sake:

The tests we had to do were the following:
  • An "integrity test" that Cochlear does prior to surgery to see if they can find anything wrong. This involved a lot of wires taped to her head and big plugs stuck in her ears...and three adults to hold her down long enough to get the results. Poor girl. She was terrified.
  • A CT scan to make sure the implant hadn't shifted during growth or something else totally out of the ordinary. This involved having her arms, legs, and head tightly belted down to a table and pushed into a huge circular camera, which for a four-year-old is pretty scary. If she had even so much as flinched, the photos wouldn't have worked, so everybody thought she'd need to be sedated. But, to our amazed crew, she chose to be stunningly brave and we got everything we needed on the first try without any sedation. Way to go Brynn!
  • A sedated eSRT, which basically measured brain responses to each individual electrode. This told us if any individual electrode had become too loud (which often happens over time for any implant recipient and is why regular visits to the audiologist for updated programming is required). We had to drive to Logan and stay in a hotel to do this test so it was quite an adventure. Thank you, Grandma, for helping us through it so Matt could go on his business trip!
  • We also tried turning the volume way down on the right ear but she hated "the quiet."
  • And we tried switching the power usage to manual instead of auto.  Sometimes the auto will give too little power to the implant and the sound will cut out periodically as a result.  However, this manual power uses more battery so it may have compounded our problem.
For the several months we spent working around hospital schedules, frequently traveling to Logan, and trying to figure all this out, she had a lot of time being deaf. Her right implant has been off since April 24th. Her left one was off since June 4th. That made for 5.5 weeks where she wasn't wearing either implant. Her speech was noticeably worse after about 4 weeks. All the consonants requiring the front of your tongue (T and D especially, but also Z, CH, SH, TH, etc) were all moving to the back of her tongue (T became K and D became G, etc). Because she didn't use her signs much (she talked, I signed), and her speech was so deteriorated, I was having a really hard time understanding her. Even when she wore her left ear for a full day, she corrected me when I said, "Let's read Dumbo." She said, "It's not Dumbo--it's Gumbo!" I think I'll just let her figure out the correct word on her own...

As for the beeps, these unfortunate sounds happen not only when the battery is low or the program changes, but also when we update the program for her internal electrodes.  In fact, this routine programming is one of the reasons why she hates the beeps so much.  Because each time we update her program, it's like moving the furniture on a blind kid--she has to learn to hear all over again with that ear.  Ideally, this occurs every 6 months in order to keep her hearing at her personal best, but I have no idea when she'll allow us to update that program again.  She thoroughly hates our audiologist now because the integrity test (her most traumatic one) was in his office; and he was present when she got the sedation shot for the eSRT test, too.  Lots of negative association with him may very well require getting a new audiologist in Denver or something equally inconvenient.  Time will tell.  At this point, I prefer less-than-perfect hearing to seeing an audiologist any time in the near future.  I have no idea how old she will need to be to understand that the beeps are not going to kill her.

Throughout this experience, I've been inexpressibly grateful she can read.  Some days, writing her a note was the only way I could get her to understand what I was saying.  It was actually really therapeutic for her, too, and she would often ask me, "Will you write to me, again, Mom?"  I should do that more in the future.

I'll talk more about how we got the left ear back on her head and the decision to go to the Deaf Branch in the emotional journey post.  As for now, I think that's most of the details I want to preserve.  To everyone who has followed our story or worried about my little Brynn, thanks for your prayers.


Alyson said...

Bless her little heart. I hope you can help her overcome some of those traumas, and I'm glad you guys are back on a good track. Prayers that things will keep going the right direction.

Jenn Ross said...

I'm glad things are going better and I will continue to send positive vibes your way!!

Heather said...

Hi Natalie! I'm glad things are looking up! I was hoping you would answer a question about your blog! My name is Heather and if you would email me at Lifesabanquet1(at)gmail(dot)com :-)

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