I am not in control….

Forgive any misspelled words. I’m writing this from my phone which has its own idea of spelling and grammar.

A few weeks back, Zach had repeat hearing testing done to see if his hearing has deteriorated. It was bad news. Both of his ears have deteriorated to profound hearing loss. We knew this was a possibility back in the ER. One of the meds he was on is known to damage hearing. But at the time of life or death, we opted to worry about his hearing later. And now, it’s later.

This week Zach will have a CT scan (and maybe an MRI if needed) to determine if his cochleas are healthy for cochlear implant surgery. Often after someone has bacterial meningitis the cochleas can ossify, making it physically impossible to perform the surgery. In this surgery, a series of electrodes are inserted in the cochlea to stimulate different tones of sound. If there is bone, they cannot be threaded in.

So why cochlear implants? I’ve been doing a lot of research on CI and in some deaf/hard of hearing communities it is controversial. There is a school of thought that hearing loss shouldn’t be treated as a disability, and that one can learn to use their residual hearing along with sign language and lip reading to fully communicate. I can’t say I disagree.

But what about a boy with existing challenges? With Zach’s developmental delays due to polymicrogyria and meningitis, there’s no way of knowing right now how well he can learn to communicate with signs. He can certainly sign “more” when he’s hungry, and in his mind he’s thinking “what more do I need to know?” because he is a stubborn little turd. We are at a critical juncture where his brain will be able to take he stimulus of hearing and develop. If we wait until he’s older, those neural pathways will be gone. His ENT tells us there is a high success rate with development and CI at his age, but at three or four, the success rate plummets. We feel this will give him the best chance of communicating, possibly coupled with sign language.

The next step of this journey is the testing I talked about before. Here is where I must learn I am not in control. What has happened in his ears has happened, and nothing can change that. If there is bone, we move on. If there isn’t, we move on a different path. But the mom guilt sets in nevertheless. We should have tested his hearing several times before this last one, but due to all of our moves, insurance company changes, other kid stuff going on, the impossible scheduling at Franciscan Skemp in La Crosse, and more, it didn’t happen. Can’t go back. You moms out there can relate to the fact that the guilt is there anyway.

So my mantra this week is “I am not in control. God has a plan.” And I hate not being in control. Those of you who know me are screaming “DUH!!!”

If all goes well on Friday, the next medical step is a bunch of additional appointments, such as testing his vestibular system, meeting with a speech pathologist, learning how to use the device, discussing our expectations, and one more I can’t remember. All in one day. I think he will handle this better than the time he had an EEG and swallow study in the same day. I didn’t think we’d be friends after that.

And then there is choosing the implant. I think when most people hear that they think c cup or d cup? Not in this case. We have three manufacturers to choose from, and I’ll write more about that if we get to that stage (my grandma is looking down on me yelling “THINK POSITIVE AND SAY WHEN YOU GET TO THAT STAGE!”). We have all the info packets that remind me of when I got college info in the mail. This is a bit more important than that decision.

And if/when we get to that, there’s the issue of whether or not insurance will cover it. More on that later. And probably several spaghetti feeds if needed. So, if you pray, please pray for healthy cochleas, for guiding us on the path, for guiding our decision making, for opening the hearts and heads of those at the insurance company who make the big decisions, and anything else you can think of.

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