Mommy knew going into today it was going to be a marathon - three different medical appointments - oh the fun!
It all kicked off at 11:15 with my long awaited follow up appointment with Dr Morales. In August I had a CT scan and today he was going to review it and make a recommendation on jaw surgery. Mommy had also scheduled my Dysphagia clinic appointment at 1 pm. Since the clinics are just steps away from each other she figured there would be plenty of time to get from one to the other. Hmmm, not so much. We didn't get into a room until close to noon and then it wasn't until 12:30 that Dr Morales made it in.
Mommy had brought photos of my CT scans pre and post from my last distraction. Dr Morales took a look at those as well as at my newest CT scan and explained that the bone from my previous distraction had relapsed so we are essentially starting over. Dr Morales looked in my mouth (which I hated of course) and then explained that he would recommend another distraction although he prefers external to internal distractions.
If you click on the link you can see a photo of Nathan a little boy who is also seen at Primary Children's with his external distractors in place. I am scheduled on 1/31/11 to have the external distractors put on. I will probably be inpatient for a few days and then at home for the next few weeks my parents will turn the pins. Then the hardware will stay on for 3-4 months! That's right 3-4 months! And because it is so critical that they are not bumped I will not be able to attend preschool during that time. In fact, my parents will have to monitor any situation in which I am around a lot of other children (family, friends, activities in the community) to ensure I don't knock them out of place. At the end of the 3-4 months I will go back to the hospital and under anesthesia they will remove the hardware. At that point we'll all hold our breath to see what happens with my tongue. What's up with my tongue? Well, before I can get a trach out I need to be able to breathe awake and sleeping through my nose and/or mouth. I have been doing capping trials now for months during the day and that's going well. But once I fall asleep my tongue falls back and covers my throat. The hope is that with more room in my mouth from the distraction, that while I sleep the tongue will fall forward on it's own and leave a big airway for me to breathe from. I don't think the plan is to try to decannulate immeadiately after my distraction but we'll just have to wait and see.
Dr Morales finished up with a few minutes to spare so off we went to the Dysphagia appointment. They were ready for us and we were hustled into a room without much time for me to play in the waiting area. Helene, the speech pathologist came in first and made sure we had gotten in to Courtney for speech and feeding. Then in came Sharlene, my dietician. Daddy has been saying for weeks that I am looking thin and sure enough when they weighed me today I had dropped from 25 lbs 8 ozs to 23 lbs 7 ozs. Sharlene is thinking that the drop is related to starting preschool and being more active during the day. The plan to get me bulked back up is to leave my volume the same but increase the calorie content from 22 kcal to 30 kcal.
A short time later, Dr O'Gorman came in and agreed with Sharlene's recommendation. In addition, they discussed my milk allergy and since the results show a pretty severe allergy they want to have me see an allergist to get additional testing. The concern is that after my jaw distraction we start to focus on getting me to eat more volume and more variety they don't want to risk finding out then that I have other severe food allergies. The allergist can also decide if I need to carry around an EPI pen. Since I take such small volume of any food or drink right now, it's unlikely over the next few months that I would unknowingly consume a large enough quantity of milk products to cause a problem. But, since my allergy response is respiratory (rather than a rash or vomiting) it's something to be aware of.
Dr O'Gorman also discussed the issue with my button placement. She is convinced that the "sucking in" phenomenon is directly related to the location. However, if we have found methods for controlling that (more frequent feedings, small feedings at night) she is not anxious to have one more surgery with the jaw distraction coming up. However, if after the jaw distraction I am not able to eat more by mouth and it looks like the g-tube will be a long term thing (possibly forever) then it is probably a good idea to eventually get it moved to a more common location.
By this time, I had had about enough of sitting in a small room and I was due for a nap that I was probably not going to get. Mommy took me home and I got a few hours to play before I was back in the car for my third and final appointment of the day - speech therapy with Courtney. Since Courtney and I play games, I am always super excited to go see her. In fact, for the 10 minutes or so we waited for her I would yell out "Courtney!" any time a female walked by. Today we got to play two games while working on my speech and at the end when I started to get a little antsy, Courtney took me into the OT room and hooked up a swing for me.
With no nap and a day full of appointments I was pretty wiped tonight and fell asleep with no trouble and nice and early!
Peyton Nicole Smith