I met with the ENT yesterday to review the scans. She was extremely positive about the results, and walked me through the images. She did mention that the auditory pathways were slightly more "bulbous" in shape than most people's, but said that that was a pretty normal variation. She pointed out how the nerves could be followed on the different images, and how the facial nerve was well protected by bony structure. Facial nerve damage is one of those rare risks with CI surgery, but Peter's anatomy should minimize that particular risk. She pointed out the loops of the vestibular system-.very cool to see. One thing from the report got cleared up, too. The CT scan mentioned non-specific nodules on the tympanic membrane-,she said it was just earwax! I even saw all of Peter's teeth just waiting to come in! (no teeth yet, and the scans don't tell me when they will erupt!) Everything looked great, and should make the surgery a routine one. So all that is wonderful.
Then the Dr. Starts telling me about a CI conference, and how the trend is to do the implants sequentially as opposed to simultaneously, especially in children, unless there is a reason like meningitis and the risk of ossification of the cochlea (which makes it impossible to implant). She doesn't come right out and say that we should do just one, but it is clear that she is steering in that direction. If we did one ear, then the second ear could be done 3-6 months later. I am not sure if I want to fight to get both done at once. She also said something about how hard it is to test kids, and how programming the CIs one at a time is easier on the kids....The Dr. left the ball in my court, but I don't know if I actually have a decision or not.
At the end of the visit the Dr. told me that the surgery schedule wasn't open for April -May until February. Talk about a let down. I know February is right around the corner, but I thought I would get to book a date at this appointment! And originally the Dr. had said early April for a surgery, then the CT report said something about March, and now the Dr. is saying late April or even May!!! I hope we don't have to wait until May. The Dr. had expressed reservations about some European surgeons routinely doing simultaneous bilateral implants on six-month-olds, but I can understand parents pushing for their kids to hear as soon as possible. I don't know that I would have pushed for surgery at six months, but if we have to do them one at a time, I think Peter could do one now- as he is totally healthy, and a big strong baby. There is talk that the FDA might well lower the age guideline from 12 months to nine months, but that won't happen before Peter gets his implants.
I guess I just wait for the scheduler to call. Then do I say "give me a double time slot!" Or what? I have the appointment with the CI audiologist in a couple weeks, but I don't know if I have to wait until after that appointment to book the date. I am a little confused here, but in a few weeks it will all be clear.
I did not have the energy left to fight for bilateral. I guess you have to keep reminding yourself that eventually, everything will get done that needs to get done. They will get both ears when the time is right. Our ENT explicitly told us that he does not like doing simultaneous implants on babies, and really, I was okay with that, especially after being told that the second one could be done later in the year. That is interesting to hear about the FDA lowering age requirements. Curious to see how that will play out. Hope you hear something soon!
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