On Wednesday, Aleks went to see the otolaryngologist and discovered that he needs ear tubes again. He was originally scheduled to get a new set in the fall when his old ones had come out, but then the pediatrician had noted no fluid and no signs of infection, so we canceled the surgery and followed up with the ENT again. At that time, there was no fluid and everything looked good, except his eardrums weren't moving properly. So we were scheduled for a hearing test. Aleks' hearing was fine, but the pressure levels were not good. So we had to follow up again with the ENT. Hence this Wednesday appointment.
The fluid is back and the pressurization issue indicate that while his Eustachian tubes might be working, they're not working effectively. This is common in children with cleft palates as the musculature of the soft palate that has not formed correctly is connected to the Eustachian tubes, thus causing them to not function properly. So he's going to have another surgery to place his fourth set of tubes.
I knew that we had an appointment coming up for the cleft/craniofacial clinic since we'd missed ours back in February due to illness, and that there may be other things we needed to do at that same surgery. Aleks is approaching the age where he'll be ready for his biggest of all surgeries, the bone graft. Before they can do the bone graft, however, he must have a palatal extender placed in order to widen the space for the bone. It needs to be in place for 6 months or more. I'm not entirely certain what all it entails or if they'd even recommend doing it under general anesthesia, but before we go making appointments, I needed to make sure there wasn't anything else.
Additionally, I knew that Aleks has a couple of teeth inside the cleft area that have been deteriorating since he was about two and that it might be high time to get them pulled. We've had terrible luck with dentists though. We were originally told by the dentist at the cleft clinics we've attended very, very little. All they ever said was to see a pediatric dentist. Why they themselves are not pediatric dentists is beyond me. We went to see a pediatric dentist when he was 2, but I'm not certain if I ever saw the dude himself or not as the place was like a cattleyard for moving poor people about and it seemed we saw someone different every time. It was BS, plus they never said anything at all about doing something about the decay (which was mostly okay with me). I went there a couple of times, then switched to going to our regular dentist, who I don't really like either, and who so helpfully told me that I should see a pediatric dentist about the decay. I believe we went back to the stockyard one more time for another useless check up, then just did a regular checkup last summer at the family dentist and said forget it.
Well, since it's been looking worse, and we're already having to have another surgery, it seemed high time to find a new ped dentist and figure all this out. So I looked in our provider directory and picked a name. Turns out, he's great and has 30 years experience working with kids with clefts, used to do the craniofacial clinics, and has a family member with a cleft lip and palate. He still does a lot of typical American dentist stuff, like fluoride rinses, but I think I can live with that for some actual conversation and progress. Aleks drew 7 million pictures for the entire staff while we waited. The whole design scheme was great - it looked like very expensive interior decorating from 1979.Then he got his teeth cleaned and his very first x-rays.
The x-rays were developed and I was exactly right - those two teeth need to come out and it should happen at the same time as the ear tubes. Now we just have to go to the cleft clinic, see what they want to do, find a surgeon to rip open his mouth, and a really good secretary to schedule it all, and we're good to go.
1 comment:
love that pic of him drawing. hang in there.
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