It was my much anticipated follow up appointment with Dr Schendel today about my jaw. The trip to Stanford did not get off to a good start though, when Mommy realized the car plug for the DVD player was in Daddy's car not Mommy's so that meant no DVD's for me on the trip. But on the ride out, it wasn't needed. I fell asleep five minutes into the trip and didn't wake up until five minutes before we got there.
After a nice long nap I was ready to run around the waiting room saying hi to all the children I met and terrorizing the fish in the tank. Although Mommy had been told Dr Schendel was running on time - he didn't come into the exam room until almost an hour after the appointment time. Despite all the waiting, Mommy got all her questions answered quickly and to her satisfaction. Here were the questions and the answers:
Q: Would the previous jaw distraction have resulted in some of my top teeth not coming in with all the others?
Q: Can we use Mederma on my scars (one side is much worse than the other)?
A: Sure, it wouldn't hurt but Dr Schendel plans on excising the scar in the next surgery.
Q: Can a scope of my airway be performed during my next surgery.
Q: When is the recommendation for doing the pharangeal flap surgery?
A: Got to do a jaw distraction first to make room in the mouth. At that point Dr Schendel can get a better look - it's possible it may not even be needed.
Q: What are the pros and cons to using rib bone instead of a jaw distraction?
A: Rib bone has been used in the past to lengthen jaws but because the rib bone is so small (width) when children grow up it's harder to do additional jaw surgeries without having to build up the bone in someway. However, rib cartilage is great for the tempermandibular joint. Dr Schendel wants to do my next jaw surgery as a two stage procedure.
Option 1 - if joint looks okay then do a distraction to lengthen the jaw and to widen the joint
Option 2 - if joint doesn't look good then take some of my rib to widen my joint and then do a traditional distraction to lengthen the jaw
Dr Schendel wants my parents to take me in for another CT scan towards the end of the summer. Depending on how my joint looks will determine which option to go with. Regardless of the option here is the estimated timeline.
October 2009 - insert distractors (or rib)
January 2010 - remove distractors/insert new distractors
March 2010 - remove distractors
Whew - that's a lot of surgery in a pretty short time! In addition to treating Adam (he's the little boy younger than me with the same syndrome) he now has another Nager patient who is very similar to me. She is 3-4 years old and will probably be getting the rib surgery/distraction combo as well. Maybe I will run into her in the waiting room some day as well!
After a short but informative visit it was back into the car for the long car ride home in rush hour traffic. Even without the DVD player I was very good - up until the last 1/2 hour and then I decided I wanted out of the car and I was going to let everyone know it! Nothing Lucille or Mommy did would stop the crying (good thing I haven't figured out to cover my trach when I am crying to be even louder!)
Peyton Nicole Smith