After months of waiting, it was finally time for my first craniofacial panel appoinment at Primary Children's Medical Center. I am by no means a craniofacial panel rookie - I had two panel appointments at UC Davis and one at Stanford/Lucile Packard. This appointment was a little different, though, because it only included a few specialties - ENT, plastic surgery, dentistry/orthodontia and speech. So instead of a 4 hour appointment it was closer to 2 1/2. First up was dentistry/orthodontia. Dr Yamashiro reviewed the previous panel appointment notes. Since I am already being followed by the dental clinic, he didn't have a lot to add at this point but said, "99.9% of Nager kids need orthodontia work" so Mommy knew we would be seeing him again before too long!
Next was Dr Muntz the ENT. If you have followed the blog over the years, you know Mommy has hoped to find an ENT that she would respect. She felt instantly comfortable with Dr Muntz and breathed a sigh of relief. He didn't have any great news - but it wasn't anything she hadn't heard before. Mommy and Dr Muntz reviewed my past medical history and how we ended up in front of him. He was in agreement that it was best to keep my trach in at least through several more surgeries since I have been a nearly impossible intubation in the past. Despite not decannulation in the near future, he encouraged Mommy to have me try capping sooner rather than later. It would give us a good idea of the status of my airway but it would also contribute to less infection if I was breathing through my mouth and nose instead of my trach. To my serious protests, he did a quick exam of my mouth. He wasn't able to get a great look but he is concerned that I may not have any soft palate at all - which would make a pharyngeal flap surgery very difficult. Until plastic surgery gets me under anesthesia, though, he will have to wait to make a final recommendation.
Next on the list was Dr Morales from plastic surgery. It has been over two years since I first saw Dr Morales for a surgery consult. Although my parents decided to go with Dr Schendel at the time, they liked Dr Morales and have heard great things about him from other families. He also did an exam of my mouth and got a general update of what Dr Schendel had done previously. He agreed that another distraction was in order but I am a pretty complex case due to my TM joint ankylosis. He would actually recommend trying to repair the TM joint first but the reality for children my age is that the needed stretching and exercises that need to happen post surgery is unlikely. Therefore, first up will probably be the jaw distraction. Before any decisions on time and method, though, he wants to see us at his own clinic and he wants a CT scan to get a better idea of what he is up against.
Speech came by for a quick hello since I had seen speech folks in the dysphagia clinic appointment a few weeks ago. While I went back to the wiating room to play, Mommy met with the nurse to get any questions answered. The nurse has been following my blog recently and she let Mommy know that I am one of four kids currently in the craniofacial panel that have Nager syndrome. Mommy just talked to Isaac's mommy a few weeks ago. There is another child in Idaho that she will be contacting soon and will pass on my blog address in case they want to chat. She is going o research who the other child is as well. Although Dr Schendel was treating quite a few kids with Nager syndrome, it sounds like Dr Morales is as well.
It was a busy appointment but there weren't any surprises - in fact it went pretty much as Mommy had predicted. In a few weeks we should get the
"results" back - basically just notes on the recommendations of the specialists. I'll let you know what they say.
Peyton Nicole Smith
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