Friday, April 4, 2008
Thursday, April 3rd, 2008
What an exciting day! There is so much to tell all of you. To begin, it was the appointment to see Dr Schendell at Stanford/Lucile Packard Children's Hospital. It was a serious of coincidences that got us here to begin with. First, Mommy spent months trying to get me in to a pediatric gastroenteriologist at UC Davis about my reflux. Eventually, my pediatrician decided to try to get me in to a different GI outside of the UC Davis system since UC Davis refused to take me. At my first appointment, my GI, Dr Davies, asked who would be doing my jaw surgery. When my parents said they were checking out a few people she mentioned that she knew of Dr Schendell at Stanford. Mommy didn't have the spelling of his name or anything but felt impressed to go online and see what she could find out about him. A few months ago she left a message with his nurse to see about getting an appointment. At that time, his nurse told my Mommy that he had treated 11 other children with Nager's. In fact, she said that he was currently treating a little boy who has Nager's whose mommy had Nager's too. While waiting for the appointment, my Mommy saw a posting on the Nager's yahoo group from the mommy of this little boy. They communicated by email a few times but had lost track of each other. Which leads to the first exciting part of the day. My parents were about 1/2 hour early for my appointment. While in the waiting room, I was looking over Mommy's shoulder at a baby across the room. The little boy's grandma said, "Look Ami, she looks just like you did." So Ami, the mommy of the little boy walked over. She asked my mommy if I just had a small jaw or if I had a syndrome. Mommy said I had Nager's. Ami smiled and said I have Nager's and so does my son, Adam. You guessed it - this was the same mommy that my mommy had been emailing back and forth with a few months ago! They just happened to have the 1:45 appointment of the day with Dr Schendell and he was running late so they were still in the waiting room - and my parents happened to be 1/2 hour early for my 2:15 appointment so we just ended up bumping into each other. Well my parents took all of my stuff and came over to sit by Ami, Adam and Ami's mommy. The mommies started showing us off to each other. My mommy asked if Ami would mind if we got a picture together since she wasn't sure when I might ever see another Nager's child again. (After all, how amazing is it that if there are only 80 documented cases in the world - 3 would be sitting together in the waiting room!) So you can see the picture above of me checking out Adam's jaw. He had a distraction done about a month ago. He was coming back for a follow up appointment.
The adults compared their machines, equipment and hearing aids (we have a better hearing aid, a smaller suction machine - they have a smaller pulse ox machine) and talked about some of the similarities between the three of us. Before long, Ami and Adam got called in to their appointment so we had to say goodbye.
Later, it was time for my appointment. Dr Schendell's nurse came in and asked what surgeons we had already talked to. When Mommy said, "Dr Morales at Primary's" the nurse responded with, "Louie!" (Obviously a small craniofacial surgery world). Then Mommy said, "Dr Sykes at UC Davis." The nurse got a strange look on her face and said, "Dr Sykes is doing jaw distractions??!!" (Another nail in his coffin!) Dr Schendell came in a little later after reviewing my CT scan. He said he would recommend doing an internal jaw distraction now. Previously, my parents were told that I was not a candidate for an internal distraction because my bone was too small and because I needed movement in two directions. Dr Schendell said that my jaw bone was plenty big (he said Adam was actually more severe then I am) and that the curved distractors allow for some movement both ways. I would be inpatient about a week and then because of my trach I could go home for the next few weeks and have my parents turn the pin. He prefers internal distractions because he said the scarring is less and he likes the results better. He said he did the external distractors for 12 years and has been doing the internal for the last 8 years. He was pretty confidant that after finishing the first distraction I would be able to get my trach removed but they would do another CT scan and a scope of my airway before trying. He would leave the internal distractors in for a few months in case he needed to do another distraction but when it came time to remove them he would also fix my cleft palate at the same time. Dr Schendell said he is a month or two out on surgeries but there isn't any preop work that would need to be done - would just need to schedule the surgery.
On the ride home my Mommy and Daddy agreed that they like Dr Schendell and trust his opinion. Although the center is several hours away Mommy could probably stay at the Ronald McDonald House while I was inpatient. There would be several trips back and forth over the months following the jaw distraction but not as many as they first thought. At this point, my parents want to research Dr Schendell a little more and ask other parents of kids with jaw distractions what their thoughts are on the internal distractions before scheduling anything.
It was a long ride back in rush hour traffic, but I know my parents are glad they took the time to meet Dr Schendell. Running into Ami and Adam was a bonus!
Peyton Nicole Smith