It was a pretty busy day today - with one home therapy appointment and one appointment at UC Davis.
Feeding Therapy was first up and I had a great time with Karen eating and talking. She introduced me to something even better than animal crackers - chocolate animal crackers! They were an immeadiate hit! She used a spoon to crush them up and I would put them on a spoon to eat. Yummy! While I was working away on those, Mommy and Karen checked out my CT scan from a few months back. Karen wanted to get an idea of how many of my teeth actually line up. What she saw makes a lot of sense when it comes to my difficulty chewing. Officially, I only have portions of one set of teeth on each side of my mouth that actually meet up so when it comes to biting and grinding my teeth together for chewing it is almost impossible with my current mouth structure. After my jaw distraction more of my teeth should be able to line up but since that is several months away now, continuing to have me eat foods that dissolve easily or are in tiny pieces makes the most sense.
After a quick nap it was time to get in the car to UC Davis for my trach clinic follow up. These are scheduled every four months so the ENT can check on my progress. Last time around, we waited FOREVER to be seen and we weren't much better off this time. Because my appointment was late in the day, Lucille drove with us to the appointment but then it was time for her shift to be over - so Mommy and I continued on to the clinic alone. We were right on time, but still waited 45 minutes before we got back to a room. Then, we waited another 45 minutes before the doctor arrived. I was a wild child by that point and was covering my trach and "yelling" as he walked in. He didn't seem to mind, he actually thought that was pretty great. In fact, he recommended we try the Shiley speaking valve.
So let's talk for a minute about speaking valves. Mommy could write pages about my experience with speaking valves but here's a short history:
12/07 - The ENT writes me a prescription for the Passy-Muir speaking valve. He doesn't really like them for pediatric patients but says we could still try it out if we wanted.
For the next year or so, my parents tried various ways to get me to tolerate the valve - including drilling holes in it to allow more air passage. Although I got to the point I could wear it with holes in it, I really never liked wearing it and could not tolerate it well without it being modified. Meanwhile, my parents are getting lots of pressure from the ENT at Stanford that I should be wearing it all the time so they were feeling pretty frustrated. The only saving grace was that Mommy heard from lots of other trach parents that their kids didn't tolerate the Passy well either.
8/09 - After Mommy hears good things about another valve called the Shikani-French and waiting for a few months for the order to come in I finally get to try it out and surprise - it works great! I like wearing it and I don't have toleration issues like I did with the Passy-Muir. My parents are thrilled and Mommy shares with everyone who will listen that if their kids don't like the Passy to try the Shikani-French instead.
10/14/09 - Mommy finds out from my ENT at UC Davis that Shiley (the company that makes my trachs) has a speaking valve as well called the Phonate. Although very different in design from the Shikani-French it is apparently also tolerated much better by kids then the Passy-Muir. During my appointment today, Mommy popped it right on me and I ran around the room talking with it while Mommy and the doctor talked. So now I have two options for talking and Mommy couldn't be happier.
After chatting about the speaking valve, the doctor suggested that it was time to move me from the 3.5 neo (neonatal) trach size to the 3.5 ped (pediatric) trach size. Mommy should have seen it coming because every time she tells folks what size trach I wear they are always surprised I am still in a neo. Basically the hole diameter is the exact same size but the length the trach extends into my trachea is 8 mm longer. Most kids move to the ped size because they don't need a bigger hole to breathe through, just a longer length to accomodate their growth.
The doctor wanted to have Mommy change it out right there in the office but because Mommy was driving home with me alone in rush hour traffic after the appointment she said no way! Espesically, since the biggest side effect of moving to a longer trach size is coughing - and you know what happens when I cough a lot - that's right VOMITING! So they gave Mommy the new trach to take home so her and Daddy could change it out tonight instead.
The doctor threw Mommy for another loop when he started talking about decannulation. Now he didn't suggest doing it tomorrow or anything, but after my next round of jaw distraction surgeries are completed if my jaw is in a good position and I am doing well he would consider it. Mommy was a little confused - she thought everyone was in on the plan to keep a trach in me until I got through a few more needed surgeries, but the doctor doesn't necessarily think it will be a problem. If hand surgery is scheduled for next summer I will still probably have a trach at that point. Other future surgeries are the BAHA surgeries and potentially one to lower my palate. If he is talking decannulation in a year or so - those surgeries wouldn't have happened yet. Since the jaw distraction isn't until next year and it will take 6+ months to get through all three stages of it, Mommy isn't going to think too much about this right now. It's certainly ironic that at one time Mommy would have done anything to get my trach out but now is more worried about keeping it in!
On that note, Mommy and I headed home and despite several hours passing, I hadn't forgotten about my chocolate animal crackers (Karen was nice enough to leave a few extras behind). Mommy crushed them all up for me and I spent the next hour licking them off my table (since using a spoon just seemed like way too much effort)! When Daddy came home it was time for my trach change and although Mommy was very nervous it went pretty well. Initially there was a lot of coughing and then a few coughs here and there before I fell asleep but otherwise pretty uneventful. Whew!
Peyton Nicole Smith
