Armed with my CT scan, Dr Diaz was ready for me this morning for my otology appointment. I think he thought he was the bearer of bad news when he told Mommy I was a poor candidate to have my ear canals repaired. My parents had been told that before, so she wasn't upset at all. Dr Diaz showed Mommy my CT scan and explained that I have a very small middle ear and the ossicles are not formed. In addition, the canal from my middle ear would have to be built to my outer ear. My ears are low set so the smallest length from point a to point b would end up at my jaw - not at my ear. Therefore, the ear canal would have to be longer then is optimal to have it end up at my outer ear. Were they to be able to rebuild my ear canal and middle ear best case scenario I would only end up iwth 40-50% of normal hearing. With my BAHA's now on the softband they estimate I have about 80-85% of normal hearing and when the BAHA's are implanted when I am older it should be closer to 90-95% hearing.
So knowing that an ear canal repair was not a good option then Mommy wanted to discuss implanting my BAHA. UC Davis likes to wait until kids are about 5 before starting the process. It has to happen in two stages. The first step is to implant the titanium piece underneath my skin and attach it to my skull. Then about six months later after it has had time to grow into the bone they will attach the outer piece that my BAHA will snap on to. Each surgery is only about a half hour under anesthesia. Since my parents are shooting for me to get my trach out by the time I start kindergarten at 5, Dr Diaz is recommending that I come in when I am 4 to have a temporal scan. Then if the bone looks good, at about 4 1/2 he will do the first part of the surgery and then the second part six months later. Since I am having another jaw distraction this year and my second hand surgery on my left hand is scheduled for next summer then the BAHA surgery was the only other on the timeline at this point that we wanted a trach in place for. If all goes well I could try for decannulation after the second BAHA surgery. It all sounds good in theory now we'll just have to wait and see how it all ends up!
Peyton Nicole Smith