Surgery for laryngomalacia and an omega shaped epiglottis

My infant son was diagnosed with laryngomalacia a few days after he was born. He had a wicked stridor, and we found it mildly entertaining that our son sounded like an 80 year old lifelong smoker. We were told after a year or two the condition would right itself. No need to worry. Everyone kept saying how incredibly rare it was for a baby to require any kind of intervention for laryngomalacia. No doubt it's rare. Alas, our baby was the rare case.

The first trip in the ambulance in the middle of the night to Boston's Children's Hospital was scary. My son just kinda, well, seemed to stop breathing. He was flailing all about, trying very hard to get a breath. When he did catch a breath, he was panicked. He'd cry a terrible cry and then settle down. This happened a few times and we called our pedi, who told us to call an ambulance. About 2 minutes later, we lit up the street like a Christmas tree with a firetruck, an ambulance, and an EMT SUV.

I had to stay at home with our 2.5 year old daughter, so my wife got to stay with our son at the ER. Putting a 9 week old through throat x-rays, chest x-rays, a scoping from the ORL, and the associated medical examinations traumatized my wife. If I were there I probably would have been traumatized.

My son stayed for observation in the neonatal intensive care unit (or as everyone calls it, the "NICK-U") for a few days, during which time nothing interesting happened. A few days later we saw a pediatric ORL (that's what ENTs like to be called--ENT seems too vulgar; stick with the Latin). My boy got scoped, which isn't as miedeval as it sounds. They gently thread a very small fiber optic wire up his nose and down his throat to take a look. It's not terribly comfortable, but it's actually not very invasive, and after a bit of fusiness during the 2 minute scoping, our son was undisturbed. The ORL said that he thought our son would benefit from a supraglottoplasty, where they basically zorch away some extra material in his larynx with a laser and make a few incisions in the hope of changing the shape of his epiglottis.

We thought this was a bit radical. After all, putting an 11 week old under general anesthesia scared the bejeezus out of us. So we scheduled the surgery for about 6 weeks out. Then my son had what the nurses called a "scary incident", which is a bit of an understatement: my son kinda sorta stopped breathing a few times for about 5-10 seconds each time. Both times he had a bit of a cold, but steaming him in the bathroom didn't improve the situation. Instead he seized up, flailing about while trying to breath. I had just taken an infant CPR course, so I gave him a few back blows, which opened up his airway and he started breathing again.

That won us another ticket into the ER and then straight to the NICU. It also presented an opportunity to do the surgery within days instead of weeks, forcing our hand. We chose the surgery. It was not an easy decision, but he has clearly benefited from the surgery. The airway of a baby is pretty dang small, and when it gets kind of cloggy from excess material, it gets a bit smaller. Then when the kid gets a cold, all that phlegm clogs things even more, shrinking the airway still further. So the margin for error gets really, really small. Under just the right circumstances, without absolutely constant vigilance, something really bad might happen. So the surgery hasn't fixed everything, but it has widened our margin for error.

We had great doctors, but doctors never seem to describe in enough detail exactly what recovery is going to look like. We'd been warned that after the surgery he'd be a little groggy, but this wasn't even close to reality. He went from a sweet 11 week old to a total basket case while the anesthesia wore off. He was acting like a 13 pound newborn--complete loss of muscle control. It was a scary night watching the anesthesia wear off. It took a good 48 hours before he was really back to his normal self. But even then he demanded constant affection, snuggling, and attention for about a week. Understandably, he needed reassurance that his family was still there and still loved him.

After we checked out of the hospital, our son started drooling a ton. Perfectly normal part of the healing process. Except that all that drool caused him to gag a lot. Gagging caused him to barf. A barfing baby is a baby who's not getting enough calories, so this was pretty alarming. He also sounded about 10 times *worse* after the surgery for a few days--also normal. It's a sort of take 2 steps backward to take 3 steps forward kind of thing. After about a week, he showed real improvement. His poops were really weird for a few days, which is typical when you starve a baby for 6 hours and then give him anesthesia.

Zantac tastes awful, and our son thought so too. He gagged on it a lot. Dribbling 8mL of Zantac into a screaming baby's mouth 0.5mL at a time sucks for everyone. But having acid reflux splatter all over cuts in one's throat sucks a lot more. So the Zantac was a huge help.

Our son's temperament worsened for a while and he freaked out whenever he was in any kind of medical situation, no matter how innocuous. But after a few weeks he promptly forgot and was all smiley for the pediatrician.

A few weeks after the surgery, our son had some scary retractions while giggling for the first time. He started wheezing and was clearly working a bit harder then normal to breath. This earned us trip #3 to the ER. This time, though, both my wife and I were able to go with our son, and this time we had to play the heavy and basically demand that they do nothing to our son other than to check his O2 level and have the ORL come down to scope him. Thankfully he was fine, but whenever he gets a cold he has to work a bit harder to breath.