Thursday, November 24, 2016

Thanksgiving

“There is no way to happiness.  Happiness is the way."
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 now, 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.

Wednesday, July 22, 2015

The Abbe Flap

Henry just underwent a grueling two-phase set of surgical procedures called an Abbe flap. Children with severe cleft issues can undergo more than a dozen surgeries before their facial reconstruction is complete. But even so the use of an Abbe Flap is very rare. In Henry’s case it was the only way to address his lack of a functional upper lip due in part to tissue loss from two failed attempts at a first-stage lip repair early on, seemingly many surgeries ago. Pulling together the sides of his face underneath his nose to eventually secure a fix left him with an ever-tightening temporary lip made mostly of scar tissue.  It had to be replaced.

The Abbe flap involved the transplant of a section of his lower lip to form a new upper one and to ensure the section remained alive the surgery was done in stages. In other words, it was a series of surgeries during which, for about 3 weeks, Henry's lips were sewn together. We found a number of articles in medical journals that described this set of procedures and the varying techniques used to perform it. But the articles were intended for surgeons. We could find little information, published or posted, intended to prepare parents or patients with what to expect immediately after the first surgery or in between the first and second phases while the patient’s lips are interfused. Here are some notes from our experience:

Surgery Phase 1
In the first hours after the surgery Henry was still heavily anesthetized and swelling had not yet fully set in.  Even so it was obvious that his lips would be tightly closed. Technically, some holes were left at both corners of his mouth, but only the slightly larger space on the right side eventually proved large enough to push through a straw.

By the evening of the 1st day and for the next two days, Henry's breathing was impeded by swelling around his sutures and in one of his nostrils through he had been intubated during surgery.  A secondary problem was that cleft children commonly have collapsed or a least partially collapsed nasal pathways.  Restricted breathing inevitably led to panic attacks and the only way to address these seemed to be to put Henry back into a sleepy state with more intravenous pain medication.

By late evening of the 3rd day, his comfort level and ability to self-adjust his breathing improved. Once he turned this corner, we focused immediately on getting him moving rather than stationary in bed.  Soon he was standing then, relatively quickly thereafter, able to get up and go for important walks around the hospital floor.  On the afternoon of the 4th day he was ready to go home.

Between Surgery Phases 1 and 2
The length of time between these phases, which is the period during which the patient’s lip are sewn together, can vary from 2 to 3 weeks or longer depending on the surgeon’s preference or a patient’s condition. In our case the period was 21 days.

Henry initially seemed less frustrated with the situation than simply challenged. Once home, we had been prepared to puree all of his favorite meals through a blender so he could drink them through a straw. He preferred instead only straw-appropriate drinks such as smoothies, milkshakes, juice, etc. He did not like the protein powder we would often try to mix in. In short, nutrition was initially a problem, but by the 3rd week he was able to push small bits of diced solid food through his lip opening. In the end he had only moderate weight loss. 

However, with his lips sewn together Henry was unable to spit out anything behind them and this included phlegm from congestion. It became a concern, especially after Henry developed a very loose nighttime cough. Extreme danger after the first surgery would arise if a patient were to vomit, as this could result in deadly choking.  Therefore, anything with even a small chance of inducing nausea had to be treated with caution which, even without congestive phlegm, would have been a delicate matter when regularly administering liquid pain medication during a lengthy liquid diet.  Patients are usually sent home with a pair of surgical scissors to be used to cut the lips open in the event of a dire choking incident. (Luckily, Henry has never been prone to nausea.)

Visually, the results of the 1st phase of the surgery looked ghastly and this did not improve much until after the completion of the 2nd phase. Between phases we found it was impossible to guess whether the transplant was going to be successful or if so what the eventual outcome of the surgery might look like. 

We had tried to prepare Henry beforehand with visits to the hospital and separate meetings with his surgeon. At the hospital we found a child life specialist who during some preparatory sessions was able to clearly reinforce our explanations of what both phases of the surgery would entail. We were not sure any of it sunk in, but apparently much of it did, since at least some of his reaction to how things unfolded seemed to be planned.  In other words, he seemed prepared for a very serious undertaking and this was important.

Although he was only eight years old, communicating without any ability to speak was not as much of a problem as we had thought it might be. We had been told of another family, in a neighboring state, with a child in who had also undergone an Abbe flap procedure and the mother suggested to us  a writing tablet, called a Boogie Board, that had helped. Henry took to writing us messages with this little erase board immediately after his surgery, even while heavily medicated, and it continued to be a primary mode of communication at home, although writing had not previously been one of his strengths since he had only just completed 2nd grade.

Around the 12th day between phases Henry discovered that he could talk behind his lips. The result was very hard to understand, however, and seemed to over-stretch his stitches, exacerbating some problems with bleeding around his lower lip.  While the writing tablet was still more effective, it became increasingly hard to go back to it.

Phase 2 and Overall
The phase 2 surgery was more than just a separation of the lips; in this case it also involved a slight rotation of the upper transplanted "flap" for its final placement plus some refinement of both lips. A week after our phase 2, a fairly long vertical suture line including and beneath Henry's lower lip came apart (dehisced), which required another trip to the hospital, this one unplanned, for that part of the surgery to be redone. In six weeks he will need another procedure, more minor, to reduce some of his scars.

Our surgeon was a plastic surgery specialist, rather than our familiar cranial-facial ones, and had not worked directly with Henry before.  At a first meeting to schedule the Abbe flap, he was fully confident in our cleft team's recommendation that it was needed now as preliminary to the work the other team specialists have waiting in the queue.  Then at a final meeting just before the scheduled 1st phase he was suddenly hesitant, due to Henry being so young.   Admittedly, this heightened our anxiety about the surgery at its start.  What helped most was locating and speaking directly to the parent of the other child who had undergone the same procedure and the support we received independently from the hospital's child life services.

Henry was obviously deeply affected by the experience, but not damaged.  He's a Superkid.  Between phases, aside from all the discomfort and not being able to talk, for the most part he kept himself busily preoccupied and remained his happy self.  His new lip is properly loose and the surrounding areas of his face are no longer quite so stretched. He has traded one very large scar that would never have healed for three narrow ones that will slowly heal. 
Happiness is not the absence of problems but the ability to deal with them.
(-Buddhist proverb)