A note from Mommy:
What do I hate worse than camping (and man do I hate camping) - marathon craniofacial appointments of course! Okay so they aren't completely terrible but any time you combine a 3 year old with 4 hours of hurry up and wait during prime nap time it is bound to be good times for all involved.
Craniofacial panel at Primary Children's differs slightly from what we experienced at UC Davis and Lucile Packard. We were given a paper at check in detailing each of the six areas that would be represented and the provider that day for that area. of the six areas we ended up only really seeing four - plastic surgery, ENT, orthodontics and speech. While we waited about 90 minutes to get in for the first appointment we met up with some blog friends who also had their panel appointment at the same time - so fun!
First up was plastics with Dr Morales. Since we had only seen Dr Morales a few weeks earlier it was a sense of deja vu about what the plan will be for Peyton's future surgeries. First up will be a surgery to release the ankylosed joints. Once released, then Peyton will need to use a TheraBite (or something similar) to exercise the released joints to prevent them from ankylosing again. The hope is that once the joints are released then there will be enough room to be able to complete a pharyngeal flap surgery to modify her palate. By the time all that is done it will probably be time for another jaw distraction. We will see him aagin for follow up to the distraction in December but the joint surgery will probably be a year out. And with that timeline all hope of getting a trach out by the age of five went out the window! Actually, we'll be lucky if all the surgeries are completed within 2-3 years. Just because Dr Morales is Dr Morales he had the resident look into Peyton's mouth at her palate and shared somewhat flippantly how difficult the palate surgery was going to be. Although I fully trust in his skill set, who really wants to hear that your child's case is complex, difficult or challenging? Just for once it would be nice to hear that Peyton is a typical or easy case but I won't hold my breath ; ) While we were meeting with Dr Morales, he asked Peyton's age and instead of hearing almost 4 for some reason he heard 4 1/2. When he repeated that back Peyton must have liked what she heard because in every other appointment (or when talking to random strangers in the elevator) she told them she was 4 1/2. I let her know not to believe everything Dr Morales tells her - hee hee!
Back to the waiting room we went and just before Peyton was ready to have a melt down over wanting to ride in the car we got called back to orthodontics/dentistry with Dr Yamashiro. We presented Peyton's panoramic xrays from a few weeks back and he proceeded to share lots more good news! First off, the xrays appear to show cysts potentially developing - wonderful! In addition she is considered high risk to have pathological fractures of the few teeth she has remaining - awesome! The xrays also showed pretty clearly that are problem with fused baby teeth will also follow her into adulthood as some of the same permanent teeth are fused as well - cool! Finally, when I asked about when Peyton will be old enough to have implants to hopefully restore her adult mouth to a more normal appearance he shared the great news that it probably won't be until closer to 18 - great! Yes, Peyton will get to go through most of her teenage years with truly awful looking teeth. Unfortunately, distracted jaw bone is not nearly as developed as what will be needed as a foundation for implants. Therefore, she will probably need to have the bone built up ahead of time and we can't do any of that until we are pretty much done with all the jaw distractions she will need. Okay so I know I sound a wee bit bitter but after the first appointment with Dr Morales to hear nothing but bad news throughout the next appointment was just lovely.
And back to the waiting room we went with that information floating around in my head. Then it was time to meet with Helene the Speech Therapist. Since Peyton is already being followed by Courtney for Speech and Feeding, it was more of a catch up session on what has happened over the last year so no big bombshells thank goodness!
Back to the waiting room we went once again. Since I hadn't eaten all day and it was now nearing 4 pm I was more than a little grumpy and was having difficulty remembering small details like dates, names of procedures and such when trying to update all the different folks we had been cycling through. It was with relief that we were called back to meet with Dr Smith the ENT. Although Dr Muntz was the ENT who performed Peyton's bronchoscopy on Friday, he was not the ENT covering the panel today. I tried to catch him up quickly on her more recent history. He threw in the comment, "Distractions are really effective - except for children with Nager. It doesn't seem to work so well for them." Super! I was wanting to get an idea of the timeline to implant Peyton's bone conduction hearing aids so he suggested that I make an appointment with Dr Muntz a few months out to determine next steps for that - most likely it will require a CT scan to determine if the thickness of her skull is where it needs to be. If not, we will need to wait until she is older. I asked if Peyton would be safe to do any pool time while she was capped but as I suspected the cap does not completely seal off the stoma so swimming is off the agenda at least for the forseeable future. I mentioned that we would need to be finding an audiologist soon now that Peyton won't be attending USDB and getting regular hearing tests and Dr Smith jumped all over that and ordered us to go up to the hearing lab on the 4th floor and get that taken care of. Most of the time I would have been really appreciative to get it out of the way and not have to come back but as my blood sugar was dropping my patience was wearing thin. But up to the 4th floor we went and after a brief wait Peyton and I headed to the sound booth. For the first time, I actually sat with the audologist in the control booth while Peyton sat with the tester in another room. Peyton could see me through the window and despite the marathon afternoon she was perky and happy to go along with the test. The only problem we kept running in to was that she wanted to spend more time talking to the tester about her birthday party then she did wanting to listen!
We had been asked to bring the results back to the clinic so we ended up back where we had started. Although we had yet to talk to the nurse or the social worker they took pity on me and let us head home - 4+ hours after we started.
It has taken me a couple of days to digest all the information. I think I am over the initial shell shock but now the reality of all that awaits Peyton in the next several years (and that's just what we already know about!) is sobering. Since the hope for a decannulation is moving even further from our reach I am struggling again with the disappointment of not meeting the goals that I had set to try to have the majority of her surgeries completed and for her to be trach free by kindergarten. It's not going to happen. I remember when she was an infant and someone mentioned a trach removal probably by kindergarten and I thought that seemed like forever away and we are just about a year out and counting - it is just so unbelievable to me! Just as I have done in the past I will try to take this in stride and keep pushing on. I think the marathon of the craniofacial panel is really just a metaphor for Peyton's medical journey. We really are just in the first few miles but although the finish line is not yet in sight it really is out there somewhere on the horizon - I have to trust in that.
And on that hopeful note a video of Peyton and her new stupid trach trick - Letterman here we come!
