It’s been a whirlwind day.
Before I talk about activation, I thought I’d make mention of the weeks leading up to this event. Shannon and I have both been excited to get Alex going, but we also had our (now well-documented) anxieties of dealing with the equipment and keeping it on him, dealing with the looks he’s going to get, etc. Driving to the audiologist’s office at Buffalo Hearing and Speech this morning, Shannon described herself as feeling a little bit numb, which I could definitely relate to as well. There was definitely a feeling of running on autopilot, not expecting any miracles. In fact, we were somewhat ready to hear disappointing news; maybe one of the implants wasn’t working well, maybe all of the 22 electrodes weren’t in the ears… who knew.
Another thing that I think was on both of our minds was that getting Alex activated wouldn’t suddenly fix things, even with all of his therapy sessions. There’s a lot of work and no guarantees.
So, we walked into the office numb with low expectations.
Our audiologist and one of her student assistants pulled us back into one of their offices. We had two pretty sizable briefcase-ish things waiting for us, full of batteries, covers, cables, chargers, and a whole lot of other stuff. I saw that our audiologist already had his speech processors out and hooked up to a laptop. The whole thing moved pretty fast, so I’ll apologize in advance for missing some of the details.
Basically, the first thing that was done is she ran an impedance test. The point of that test is to check to see that all 22 of the electrodes in each implant are firing. In order to run the test, she had to put Alex’s speech processors on one at a time. I’ve written before that I was expecting this to be a pretty emotional moment like the hearing aids were, but it didn’t actually trigger anything for me. I think part of that was because the processors and the coil (the round magnet part) were both smaller than I thought they’d look on him, part of it was that I had already dealt with hearing aids and gotten over how those looked, and the other part was that THESE devices could actually help Alex hear. So that wasn’t a big deal.
Back to the impedance test – after Alex was “hooked up,” the actual test only took a few minutes per side. Alex didn’t claw at his ears too much, which was good, but he was obviously pretty tired at that point so we knew that we were dealing with a timebomb.
The tests finished, and our audiologist informed us that we were good to go – all electrodes for both sides were working and in contact! Basically, that means that the full range of sound that the implants can provide are available to Alex at this point. Our surgeon did a great job placing the implants. I breathed a sigh of relief here, because now I knew that the implants were both working and at 100%.
The next portion of the activation was to actually turn the microphones on and start to give Alex a sense of sound. Our audiologist explained that the noise is typically nonsensical to patients at this point as their brain learns to deal with the new input. The plan was to start the “volume” at very low levels and slowly raise them until Alex had a reaction. I was recording everything when she started this step and just kept the camera trained on him and Shannon. I thought we were going to have some more warning about when they’d be giving him sound for the first time, but that didn’t really happen, so when Alex reacted, I was somewhat surprised. His first reaction looked a lot like a startle – he froze up, pouted, then started crying into Shannon. I wish I could say that it was immediately an incredible moment, but I’m not even sure if a sound made him do that or if it was just the ambient noise of the microphones being turned on, so at first I was a little bit confused. Oh well, our video probably isn’t going to go viral. Ha. I honestly didn’t get as emotional as I thought I would because it all happened so fast and there was no obvious sound that seemed to cause his reaction, so I didn’t have that gut “OH MY GOD HE HEARD THAT” overload moment. It was still awesome to see it work, but it definitely wasn’t the payoff for all of the buildup over the whole journey or anything.
Anyhow, that was his right side. The audiologist repeated with the left side, and we had the same experience. He cried when the right levels were found. So we know the CIs are both saying they’re working, the electrodes are working, and that Alex is getting input from them, even if it’ just a garbled mess at the moment. The loop is closed, now he’s got everything he needs to get his hearing life started.
After both sides were verified to be working, the work was essentially done. I think we had only been there for about 40 minutes at this point. From here, the audiologist and her assistant had us practice replacing batteries and putting the processors on his ears. The batteries should last Alex through the day – good to hear since I had read of some CI users who would only have their batteries last for 6 or so hours at a time. Our audiologist then wrote down part one of our plan.
Alex’s CIs have four programs on them right now. The idea of CIs is to slowly bring them up in how much “volume” they give to the user so that it doesn’t overwhelm the user and gives the nerves time to acclimate. The analogy that was made to us was going from a pitch black room to a bright room and the need to let the eyes adjust slowly. Our goal for the next seven days is to move Alex from program one to four, which is the loudest of the batch that the audiologist programmed into the speech processors. Tomorrow by the end of his second nap, we’re supposed to have him on program two. As Alex’cs CI levels are brought up, the sound that he’s getting will also be “shaped” by our audiologist to help maximize the quality of what he’s getting.
That was just about it. Our audiologist, like the rest of our team, is awesome. She was clearly invested in Alex and excited to get going with him. She even played with him for a while before we left. We took the CIs off of Alex before we left since they’d come off in the car anyhow (we’ll work on that and see what we can do).
The rest of the day was interesting, but that’s probably better left for another post.
Overall – thrilled that we’re at this point. There’s a shitload of work in front of us, but Alex has his CIs and they’re working. They might be ugly and they might not sound incredible, but they’re enough for now and they’re only going to get better. Activation wasn’t a massive deal at the end of the day, though it was still a big step that’s now behind us.