Sunday, April 7, 2013

Liam's Left Ear Implant Is Scheduled-After Agonizing Over Choices

I've tried to write this post a dozen times over the past couple of weeks, but just couldn't do it. Every time I'd sit down to even think about it, I'd just start to cry.  Once we finally chose which doctor to go to for Liam's implant, things became much easier. It's kind of funny that the process of choosing the doctor was so much more agonizing than deciding to implant.  I think that's because we've known all along that he'd need to be implanted, so we were resigned to that fact already.

As many will remember, Liam had some complications with his first implant.  Part of the device ended up in his internal auditory canal due to his very unusual anatomy, and we had to explant the device and then re-implant it.  It was hard watching our little guy struggle with the surgery once, but twice on the same ear is a lot for anyone.  Because his anatomy is so screwy, it was decided that we might be better to find a doctor with a little more experience in unusual inner ear implants.

The school Liam attends highly recommended a doctor in NYC.  He has AMAZING credentials, the skills to implant kids like Liam, and people only praise him for his work.  The problem?  I just could never feel right about taking Liam there.  We dragged our feet for months on it because things just didn't feel right, but we couldn't tell you why. Finally I agreed to have his CT scans sent to the doctor for him to look over.  They were sent, but then sat in a mail room at the hospital for a long time before actually getting to the doctor.  Once he got a chance to look at them, he was able to have some communication with our audiologist here.  After he had spent time talking with her, she contacted us to let us know he was willing to do the surgery and gave us all the contact information to start the process.

This is where I started to feel even more sick.  I tried repeatedly to contact him leaving lots of messages and never getting a response. I finally reached a person, and he had no idea what I was talking about.  I called our audiologist and let her know I was already very concerned about taking Liam to a place that was so big that even phone messages didn't get through.  It's a big deal to me. If you're to busy to return a phone call, you're too busy for my kid. She contacted the doctor and suggested I try e-mailing him directly.  I did this, and finally got a response from him, but it was just a couple of sentences that he put directly inside my own e-mail and then just highlighted his answers.  It just wasn't quite the kind of communication I was looking for. I felt like I needed this doctor to actually pick up a phone and talk to me and really tell me what he was planning for my child.

Because I wasn't feeling 100% on board with the New York doctor, I opted to reach out to our first surgeon who had implanted CJ. He's back in Dallas where we started out and knows our family and our boys' history well. I explained what was going on, how I was feeling, and asked him his opinion of the situation. Specifically, I asked him if HE could do the surgery and have the same success as the NY doctor.  He responded quickly and openly. We had a LOT of back and forth e-mails during which he stated that he felt that, with a different electrode array, he could get 2/3 of the electrodes in, but he wasn't sure how many we could actually use. We wouldn't know that part until AFTER the initial stimulation of the device.

So, I was faced with an agonizing decision. I could take him to New York City to a doctor who I couldn't really communicate with, but who felt that he could get ALL the electrodes in and that they'd all be usable.  The New York doctor is out of network with our insurance and would cost us about $10 by the time Liam and I traveled there and got lodging, etc.  My other choice was to take him to Dallas to the doctor I felt most comfortable with, but who felt that 2/3 of the electrodes was a generous ambition.  The Dallas doctor is in network and the cost to us will about about $3,000 after we do lodging and travel.  This was for some reason, an agonizing choice to have to make. I'd feel good about taking him to Dallas and then talk to our audiologist who would strongly encourage the New York doctor for very valid reasons.

Byron and I put a good amount of prayer into it (though sometimes I feel like we could even put more prayer into it), and I felt like I needed to talk to one more person. I called our current local surgeon for his opinion.  He'd be the one to do post-surgical care for Liam and tend to any unexpected problems that should arise, so it makes sense to see what he feels.  He agreed that the choice would be hard.  If money were no concern, he'd send us to New York. Since money matters, he has only amazing things to say about our Dallas doctor. Turns out he's met Dr. Peters and really likes him and his style.  He couldn't give a real suggestion, but he said some things that I really needed to hear. And with that, the choice was made.  We are taking Liam to Dallas this summer for his second cochlear implant to be done by Dr. Robert Peters.

The sick feeling is gone. The tears and worry are gone. They're replaced with excitement and a feeling of great anticipation. I consider these feelings to be an answer to prayer and the much needed guidance I was seeking through prayer.  And so now we move forward.

1 comment:

  1. If I was mum to Liam, I would have gone with Dallas too :) best wishes for Liam's surgery!