Thursday, November 16, 2017

Midface Distraction Osteogenesis

It's been a while since our last post since thankfully it's been a full year since Henry's last significant medical procedure. We have another big combined set of procedures coming up and it involves something called midface distraction osteogenesis with the use of rigid external distraction. 

The combined results of Henry's earlier reconstructive surgeries overall have been good, but as he grows his midface region is compacting inward in relation to his lower jaw.  This requires correction.  So on Monday a surgical team will make some long cuts to the bone on each side of the upper maxilar portion of his face, then something called a rigid external distraction (RED) device will be attached to his skull. The initial surgery will require about 3 days in the hospital after which the device, which looks sort of like a metal halo, will need to stay on for roughly 30 to 90 days. For a little more than three weeks we will need to adjust the device each day to slowly extend the middle portion of his face outward. Next, Plan A would remove the device sometime just before Christmas in another surgery that would imbed plates and more grafted bone to secure the outward extension. If the condition of the surrounding bone won’t support the plates, Plan B would keep the device attached for up to 60 additional days, hoping for supporting bone to grow.  Both plans each have competing advantages and disadvantages.  In any event, we have no plan to send Henry back to school until the device is removed.

The RED device
All this would appear to have a degree of difficulty similar to the Abbe flap procedure that Henry endured two summers ago.

In advance, his doctors have discussed the fine details of what's ahead with Henry.  He is 11 now and in 5th grade.  He says he's ready, and we can tell that he is mentally preparing himself.

As with the Abbe flap we found a number of articles in medical journals that described midface distraction procedures and the varying techniques used to perform them. But the articles were intended for surgeons. We could find little information intended to prepare parents or patients with what to expect. So we'll post again as things progress to provide some of this practical information here.

Thursday, November 24, 2016

Thanksgiving, After Bone Graft Surgery

This past Tuesday we returned from the hospital with Henry after he successfully underwent a surgical procedure called an alveolar bone graft.  It went well.  Our cranial facial surgeon, who had performed some of Henry's earliest surgeries, did the work this time and he is very well practiced.  Henry is well practiced too.

At ten years old Henry knows how to prepare himself for surgery.  He knows how to ask questions about things that make him feel uncertain, and that it's okay to keep asking the same question if he has any doubts. He knows how to cooperate afterward and focus on the things the doctors say he'll need to do in order to be released to go home as quickly as possible.  And as he recovers this time, he knows that of course it hurts but he carries this with the kind of assurance that comes with having been through much worse.

An alveolar bone graft is a procedure that for Henry added bone to the gaps in the area where his upper teeth might have been had he not been born with a cleft lip and a cleft palate, in his case an extremely wide bilateral variety.  During the surgery, bone material was taken from his hip and grafted into two gaps on either side of a center "post" of cartilage and bone matter that had been constructed several surgeries ago. In taking bone from the hip, an incision around 6-8 cm long was made in his skin, then a hole was cut through the outer surface of the bone so that some of the inner portion with its marrow could be scooped out, after which the hole was closed and stitched up. The marrow will eventually grow back and the hip will be good as new, although not without being pretty sore for about 3-6 weeks.

To replant the bone matter into Henry's upper jaw, the surgeon opened the red gum tissue near the gap to be filled and peeled it away to form a pocket into which the bone matter could be packed.  The gum tissue was then closed with sutures over the bone.  Often as in this case the surgeon makes some additional adjustments to finally close the "floor" of the patient's nasal passages directly above. The procedure did not leave visible sutures; they were all sewn on the inside of Henry's mouth. Afterward, there was the usual, expected swelling.

Originally, our cleft team had planned a graft for just one of Henry's two bilateral gaps , with a second procedure to be scheduled sometime around the Christmas holiday school break, or maybe during Mardi Gras in February, to complete the graft for the other side.  But this week our surgeon felt confident enough during the surgery to just go ahead and complete both grafts now, which gave us yet one more thing for which to be thankful, safely home for this happy Thanksgiving.

Thursday, June 23, 2016

A More Gentle Summer

Henry has successfully finished 3rd grade and is having a good summer this year. He has already gone to a soccer camp and then a couple of weeks at good ol' Zoo Camp at nearby Audubon Zoo.  Meanwhile he has been swimming pretty much every day and otherwise has kept himself happily entertained.  

Medically he is also enjoying a much calmer summer. True, he is currently undergoing a gradual widening of his palate, having been fitted with an expander device that spans and slowly stretches the roof of his mouth, and our medical team thinks he is just about ready for bone to be grafted into the gaps around the center of his maxilla. But at least no one is rushing us to schedule the surgery within the next month or so and, amazingly, Henry seems more comfortable with his palate expander than his sisters are with their common orthodontic braces.

Mostly he is gleefully looking forward to our annual summer trip to the beach, although he sure wishes we could bring our cat.