Jaw Distraction details

This will be a somewhat detailed (not comprehensive as I'm Mom, not Dr.!) description of the mandibular distraction osteogenesis that Cicily is undergoing right now. This is Cicily's first jaw distraction and she is 21 months old. The distraction is being done with the goal of moving her jaw down and out so she may be decannulated and make it easier for her to learn to swallow. Dr. Singh is the craniofacial plastic surgeon doing the distraction. The device is a Synthes internal distractor. I turn the "screws" on the device 3 times a day moving 1/3 mm per turn for a total of 1 mm per day. The device will extend a maximum of 30 mm, therefore if we need to, we will distract 30 mm by turning the screws for 30 days.

Device description (in Mom terms): The mandible was broken on either side and then 2 metal plates were screwed into position on either side of the breaks with 4 tiny (3ish mm long) metal screws. A long rod is connected to these plates that extends from her ears to her chin. All this is inside her mouth, between her gums and cheeks. Then 1 1/2 inch flexible screws hang down on the outside of her jaw on either side of her trach. These screws are what we attach the screwdriver to and turn each day.

Living through jaw distraction: The distraction device is very delicate and therefore Cicily (or anyone else- including x-ray technicians!) cannot turn them (except designated 3 turns/day), pull them, or fall on them. Dr. Singh was quite insistant that any of these things could lead to device failure and ruin the distraction. Since Cicily is a wobbly toddler, she has constant 24/7 supervision to ensure she does not twist, fall on, bump, or pull her device. I stay with Cicily all day- we play lots of song games (patty cake, monkeys, etc.), read books, and do light physical and occupational therapy playtime. I also keep watch while she is napping as her habit is to stand up in her crib until she falls asleep and then roll over on her face while she's sleeping, neither of which she should do right now. Chris and Grandma DeEtte have taken turns staying up with Cicily at night to watch for these same sleep habits, give her medicine, suction, monitor oxygen levels, and ensure her trach stays humidified.

So far the distraction process is going better than I expected. Although we are nervous the space in her device is not the 11 mm is should be now, but we will discuss that more Fri with Dr. Singh. I have also heard recently that the screws become more painful to turn at the end of distraction, which I'm glad to know but sad because I was thrilled that Cicily seemed completely unaffected when I turned the screws. This process and time in our lives would not be as calm and relatively easy as it is without our amazing family and friends who have done everything from praying, sending positive thoughts, bringing dinners, watching Maya, and expressing love and concern. Thank you all so very much.