Midface Distraction Osteogenesis (2nd Phase)

We returned to the hospital on Tuesday, January 2, for the 2nd surgery of the Midface Distraction Osteogenesis.  This surgery allowed for removal of the rigid external distraction (RED) device that was attached to Henry's skull way back in the fall, just before Thanksgiving.  It also embedded metal plates and more grafted bone to hold in place the outward extension of his upper jaw that had been gained by daily adjusting the screws on the distraction device.  Embedding the extra plates and bone was an unusual measure that his surgeons felt was worth a try, since the alternative was to leave the device on for 60 more days.  The choice was Henry's to make.  He choose this extra surgery.

Henry had worn the device, which we called a halo, for 45 long days including a period of about 20 days in which, twice daily, we adjusted it slightly to pull the mid-portion of his face outward, after the 1st surgery had cut bone to free his upper jaw. Almost every phase of the Midface Distraction Osteogenesis, both surgeries and in between, was pretty excruciating and all of us including Henry's surgeons were anxious to get this all behind us.

"He sure is a tough kid," friends have commonly offered in kind observation.  He is indeed, in almost never complaining through the most difficult or painful challenges. But by nature he is far more innocent than tough. It's his own unique strength of incredibly sweet character that seems to carry him through.  He's just a really good kid.

Overall, the Midface Distraction Osteogenesis has affected his appearance by setting his upper jaw more correctly in line with his lower one.  Less visibly, he now has solid structure behind his upper lip, which will allow his medical team to next begin to plan for upper teeth.

Adjusting the Device
Adjusting the device required one full turn of two bolts on the front of the device once each morning and again each night.  Henry said he did not feel any pain each time we adjusted the device outward, even in the later stages when the turns noticeably had more resistance and when it was visibly obvious that his upper jaw had been pulled significantly forward.  This was perhaps the only part of the process that initially sounded worse than it actually was.

General Discomfort
The halo portion of the device was attached to Henry's skull with four bolts on either side and it was a substantial piece of equipment, made from titanium.  It was heavier than expected.  It was quite secure, however, and Henry got used to it relatively quickly.  The front-post distraction portion of the device had thick wires attached to a metal bar fitted to part of his upper jaw inside his mouth.  This appeared much more difficult to put up with than the halo itself.  His upper lip, which had been stretched and bruised during the 1st surgery, needed to rest against this bar.  Applying Aquaphor ointment on his lip to keep it moist helped a little. The area around the bolts on his head also needed daily care, with Bacitracin and dressing changes.  He was able to take baths and showers with a little extra caution.  Our doctors decided that a liquid diet was needed pretty much throughout, although soft foods like yogurt or extra-boiled ramen noodles could be phased in within a few weeks after each surgery.  Henry just happened to undergo an adolescent growth sprout at the time, so he didn't so much lose weight as suddenly grow very thin and long-limbed.  (Overall, he did lose a few pounds.)

The 2nd Surgery
The difficulty of the 2nd surgery was eclipsed beforehand by the incentive that it would allow for removal of the halo device.  The survey itself turned out to be another lengthy and complex set of procedures, especially in embedding the two additional metal plates and more grafted bone material into the newly opened spaces between the vertical bone incisions that were made during that previous surgery on either side of his upper jaw.  Post surgery the result was a lot of very painful-looking swelling behind his cheeks and beneath his eyes, probably the most extensive swelling we've seen. This 2nd surgery required two full days in the hospital that could easily have been extended to three, but Henry was very anxious to return home and our medical team has become quite trusting of us.  His hip is still very sore from where the bone was extracted for grafting, but its incision is healing well.

Speech
Three weeks after the 2nd surgery, most of the swelling had subsided, and Henry was able to return to school.  The downside is that the distraction process severely stretched the roof of his mouth, which was homemade to begin with.  It is now very difficult for him to speak and his voice has a new nasal tone, from too much air from his nasal cavity mixing with air from below that would normally be cut off by his soft palate.  He struggles to pronounce many basic sounds.  His doctors say this could clear up in time as things stretch on their own or, more likely, the problem will need to be addressed through another surgery (p-flap).  At present the problem is creating some challenges in readjusting to school, but he is handling them well.