Every room at C.S. Mott Children's Hospital has a bottle of Purell hand sanitizer outside the door. Generally a bottle inside the door as well, and it's best practice to make use of one or the other when coming or going from any room.

Most of the bottles are the "With Aloe" variety which, in my opinion, is the superior option to the "original" because after just a few hours of time in spent in hospital air constantly rubbing alcohol onto your hands, the aloe is the only thing which will keep your knuckles from cracking open and bleeding everywhere.

Whenever I smell Purell With Aloe I get hospital memories and hospital feelings and hospital anxieties.

Luckily, it had been quite awhile since Henry had made any new hospital memories. He has periodic clinic visits with the GI team as they track his growth, but it was all fairly routine and away from the areas of the hospital where he'd spent so many of his early days. But at his most recent check-in it was decided that his weight gain was still not where they wanted it to be and that it was time to try to find out why.

First up was a "gastric emptying" study in late October in which they filled Henry's stomach with dyed formula, laid him down in an x-ray machine, and then periodically took pictures to measure how long it took for his stomach to drain. He watched The Super Mario Bros. Movie (again) while this was happening, and unfortunately got through most of the movie because took his stomach over an hour to empty. At his age, the doctors wanted it to take around eight minutes.

Diagnosis: gastroparesis - a stomach which empties too slowly.

The next step suggested by his medical team was to "scope him," putting a camera down his throat to take a look around and see what could be done. This is a proper surgical procedure...gowns and beds and anesthesia and intubation and all that. A pretty big step up from "have you tried feeding him more?"

Plus, even though he's been through surgery before, Henry has no memories of it, and so this would be a new and scary experience for him. And for Lisa and I it would be the first time with Henry grown up enough thtat we'd have to put on a brave face for his sake instead of just expressing or otherwise processing our own fears and emotions.

So on Monday after Thanksgiving weekend we sent Natalie off to school and then drove to campus, avoided running over students as they blindly walked into the street near our old dorms on the Hill, circled into the basement of the Mott parking garage, then crossed the bridge back into the Purell-soaked halls and rooms of the hospital.

There's a lot amount of downtime involved in procedures like this. We waited in the waiting room, then went to a pre-op room and waited some more while a nurse took Henry's vitals. Then we changed him into a gown and grippy hospital-socks and waited for a Child Life team member to visit. Then we waited for anesthesia to check in and give us a rundown of what to expect. Then for his surgeon to visit and to collect consent. Then for a period of nothing because they were behind schedule. All of this waiting meant time for Henry to build up his fears and anticipation about what was coming.

We tried to offer him distractions, and Child Life is great for this purpose. They have a number of games and activities for the kids to help pass the time. They also showed Henry the mask which he'd breath through for the anesthesia and gave him some options for scented chapsticks to rub into the mask to make it smell a bit less like plastic and more like strawberries or vanilla. He nodded and grinned through these interactions but immediately went into panic mode whenever the staff left the room. "Wearing the mask," as he'd figured out, meant going into the room where Mama and Daddy couldn't come with him. And he had put way too much strawberry chapstick into it.

We tried to convince him that everything would be easy, and he didn't have to do anything but sit there, and that taking a ride in his bed on wheels might be fun, but really we weren't holding it together on the inside any better than he was on the outside. Our Child Life team member offered to stay with Henry on the walk into the OR so that he wouldn't feel so alone. I think she did this as much for us as for him.

Eventually we approached go-time and the nurse brought Henry a dose of sedative while he watched Bluey on a tablet. Within minutes he could barely hold his head up and by the time they were ready to take him his apprehensions had become moot, because he no longer had any idea where he was, who was with him, or what was even happening.

The nurse shuffled Lisa and I away down a different hallway and back out into the surgery lobby. And then it was more waiting for us.

We went down to the cafeteria and grabbed some very-cafeteria-quality food. Text updates informed us that things had started and were going fine. We took a cruise through the gift shop, and then wandered back up to the waiting room.  We were only sitting there for a few minutes before we were called to one of the surgical consult rooms...and then waited again for the surgeon to come to speak to us.

Everything did go fine. The pictures they took were interesting and showed positive signs. His stomach is bigger than I imagined it to be...small for sure, but proportional for his body size. The Nissen wrap from when he was six months old is intact and still tight enough to be doing its job. It was weird to see his g-tube from the inside. They took a few biopsies to check for things which can't be verified visually, but they don't expect to find anything out of the ordinary with those.

The primary reason to be rooting around in there, though, was to actually treat the gastroparesis. The prescribed treatment is a botox injection in the pyloric sphincter, the bottom opening of the stomach. This is intended to loosen the muscle and  allow the stomach to empty more quickly. Then they dilate the opening, literally stretching the wall with a balloon.

If Henry's stomach empties faster, then he should eat more, and more often. It seems to take effect quickly. He wasn't interested in apple juice or popsicle-slushies or goldfish in the recovery room, but after resting at home awhile he got right back to normal and at dinnertime he ate enough pizza to make Lisa and I share a look of surprise. And all week since then he's been eating more than what had been a "normal" amount before.

Side-effects from the botox should be minimal and the main downside is that the positive effects are not permanent. Or..."probably" not permanent. Surgeons are weird and often share too much information and Henry's surgeon mentioned a "seldom-spoken-about fact" of G.I. surgery which is that any time you're "in there" (in reference to his original hernia surgery) you might "nick the vagus nerve" and then who knows what effects it might have down the road. All of which I just take to mean that they don't know exactly why he has gastroparesis now, nor what exactly will happen after the injection. The stated goal is simply to get his stomach flowing better so that will mean he'll eat more, which will mean that his lower GI tract should start flowing better, etc, and maybe his body will adjust. But it's also fairly likely that we'll need to do this procedure again in 6-12 months.

Anyway, that's a problem for future-us to worry about. For now it's just nice to see him eating consistently.