Henry’s surgery this week was a medical gamble, an unusual plan mapped out by a young cranial facial surgeon paired with an old master whose reconstructive successes probably number in the thousands. The normal strategy for untreated serious cleft conditions in older children is divided in careful stages, generally with the lip first and the palate later. But Henry’s cleft palate was so extreme that it caused one to wonder: why not take advantage of his unrepaired lip opening to reconstruct his palate first? Further, given that he is at an age when most children are already starting to talk, why not reconstruct his whole palate area all at once--an uvula and soft palate at the rear of his mouth and hard palate roof at the front. Include ear tubes in this round too. Then finish the surgery with the first stage lip closure, the procedure with the greatest chance of failure because of tissue damaged in an earlier attempt in China.
The clock is ticking for this little guy. Why not try to get at least a few points on the board? Our older expert considered this plan from his apprentice colleague and promptly volunteered to assist. The best approach, he explained, is the one that’s best for each individual child. We agreed, and in effect turned down a traditional approach offered less confidently by a different surgeon at another hospital.
So we arrived to be admitted for surgery early on Monday morning and handed little Henry over to be wheeled into the operating room at 1:30 pm, which was a horrible moment. The surgery lasted more than 6 hours. Toward the end our young lead surgeon came out briefly to see us in the waiting room at about 6 pm, haggard but pleased. The palate work needed to be unusually extensive and safe regenerative dermal tissue processed from donor cadavers was used to buttress the new roof of Henry’s mouth. The lip closure as a last procedure was indeed extremely difficult and the team sketched a delicate route for laying sutures in areas where the tissue was less damaged. Extra sutures were placed under the lip and stronger non-dissolving sutures were used across the top for insurance. The result: maybe an 80 % chance that the lip adhesion will hold and overall the lower part of a face that right now is swollen but already much more symmetrical and whole.
We finally saw our little guy in a post anesthesia room at about 7:45 pm. An hour later we were settled in a private room on an otherwise busy upper floor. The initial prognosis was upbeat; the surgeons pleased with their work, relieved it was over. Nurses on the floor were familiar mostly with infant cleft cases. “You could be home tomorrow.” Morphine every two hours. Tylenol codeine in between. A steroid to reduce swelling. Intravenous fluids. Mist tent to keep his sutures from drying out.
Henry did well at first, even drinking some water from a syringe late Monday night. But at about 2 am the heavy local anesthesia from his surgery wore off. From then on it was an awful night. At 5 am the doctor on the floor doubled the morphine dose. Drugs dull the senses but there is a type of spiking pain that obviously comes in unstoppable waves. By Tuesday afternoon Henry could see past the pain to recognize us and perked up a bit when we brought his sisters by for a quick visit before returning them to good friends for another sleepover. Tuesday night was better but still difficult. This type of surgery affects so many critical functions, especially one’s ability to drink, eat or sleep. At various points after 2 am Wednesday, Henry’s intravenous splint pulled away from his arm and he became entangled in his tubes and monitor wires.
But after the sun rose Wednesday we decided the wires, loud beeping equipment, and tubes were more harm than good, so the nurses agreed to remove most of them. By mid morning Henry was alternately eating bits of vanilla ice cream and brown gravy, and liking it. At a little after noon we discovered our release ticket: chocolate milk, a small carton of which he slurped down with help from a spoon. Within hours he was pronounced officially on the mend. We are so proud of him and how he handles these hurdles. In a few months we will need to return to the hospital for another round and temporarily we’re exhausted again. But somehow, gazing at Henry at home tonight in his own little crib, this all feels like no trouble at all. How strange, then, that back on the fifth floor of the hospital we just left there is another little boy all alone, born there prematurely five months ago, who no one but the medical staff ever comes by to visit.