Gutsy Surgery: Six Months Later

I think medical time moves differently than regular time. It has split personalities, perhaps. When you have young children, the weeks and months seem to fly by somehow (“Can you believe he’s going to be FOUR?! How is he almost four years old?!!!”) but in many ways, even this last big surgery already seems like a lifetime ago.

A friend asked me recently, “So, was the surgery a success?” She’d asked me something similar before surgery – how will you know if it works? – and I had fumbled through an explanation about how there may never be a clear answer to that question, in much the same way that there’s never really a finish line for us; there’s no real “cure” with L, it’s always an ongoing process of management, and varying degrees of better and worse.

Today though, just six months out, I can say without hesitation that our October surgery was a resounding success. Even to write that makes my breath catch just a little – how gutsy of me, to make such a bold proclamation, and surely perhaps a little naive? In our house, we don’t even say “at least bedtime should be easy tonight” because that’s the surest way to guarantee it will take hours; we’ve spent so much time refusing to look directly at progress for fear it will slip away that to voice the words “resounding success” feels downright dangerous. As certain as I am that this surgery was a success, I am equally certain I will live the rest of my life waiting for the other shoe to drop.

And yet – his appetite came in with a roar less than two weeks post-op, and there’s been a hungry lion living inside him ever since. He eats seven or eight times a day, and not just grazing; he’s eating full meals, and my picky eater’s short list of “L-approved” foods has expanded from roughly a dozen fruits, carbs and cheeses (but only in very particular shapes and forms) to an entire world of food groups and variety. Meats! Fish! Nuts! GREEN VEGETABLES!

He’s eating, and tolerating nearly unrestricted liquid intake, and his gut is working so incredibly much better than we ever dared to hope before. He’s having beautiful poops (Look, mama! Let’s take a picture!), and only 2-3 times each day as opposed to the so many we were seeing before. His belly is smaller – it would get horribly swollen before surgery, due to the dilated sections and bacterial overgrowth – and he very clearly just feels better all around. The cause and effect of all these things seems a bit chicken-or-egg, but they all play off each other to keep the rest moving in the right direction.

He was able to come off of TPN (IV nutrition) about six weeks after surgery, at which point we switched to overnight g-tube feeds (that means we’re running a medical version of Pediasure through the feeding tube in his belly, which goes directly into his stomach as if he were drinking it, only in a slow, steady drip that’s more easily absorbed). Over the last three months, we’ve cut the volume of that overnight Pediasure in half, and he’s been able to maintain weight, stay hydrated and stay on his growth curve; we’re hoping to keep forging ahead and sooner or later ditch the overnight feeding pumps altogether.

The biggest remaining hurdle is vitamin deficiencies, which aren’t going away anytime soon and can cause some serious health problems over time if left untreated. But even there, it’s an ongoing process of management, not a discouraging setback – and we have some exciting prospects on the horizon in the form of patches and pills.  

We’ll never be completely free and clear. L’s gut could re-dilate. He could develop a new stricture or obstruction or perforation – I still suppress a dull panic every time he complains of a stomachache. He could experience an illness that unexpectedly throws us into a long downward spiral. And as he grows, he may go through stretches where his body can’t keep up with his nutritional needs, and we may need to supplement in one form or another.

But for now, he is thriving. He is healthy. He is line-free. And we are making up for lost bathtime.

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It’s an April miracle.

Let it be known that on this day in history, L swallowed a pill.

My not-quite-4-year-old SWALLOWED a motherflipping PILL.

This is huge – not least because about a year and a half ago, he was seeing a speech therapist for feeding issues and receiving occupational therapy for suspected sensory processing disorder. (Admittedly, the driving force behind swallowing the pill was that he loathes me poking the pill and squeezing its innards into his mouth, which doesn’t exactly rule out sensory issues here. Just let me have this for now.)

The potentially bigger reason this is huge, though, is that the particular pill he swallowed is a massive dose of Vitamin D (befitting of the superhero phase we’re currently in, we call it “Super D”). One of his biggest hurdles right now is vitamin absorption; certain parts of the gut absorb certain vitamins, and it’s likely he just doesn’t have the parts of his gut that are responsible for most of his vitamin D absorption. Twice each day, he takes a double dose of a liquid multivitamin designed for kids with malabsorptive disorders, as well as a separate vitamin E, vitamin D and liquid iron supplements.

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And these doses are large. To put it in perspective: a typical dose of adult vitamin D drops (and remember we’re talking about a 36lb child here) is 4,000 units. His regimen included those 4,000 unit drops twice each day, plus a 50,000 unit “Super D” once a week – and he was still deficient. We bumped up to 50,000 unit Super D twice per week — still deficient. We did recently add in these neat patch vitamins that claim to absorb directly into the bloodstream through the skin, which we’re hopeful might be a turning point for us, and our initial trial in the week before his last round of labs did show his Vitamin D levels moving upward – but by a whopping one point, while still taking his biweekly Super D, so the jury’s still out on whether or not we can switch to more regular-sized doses of patch vitamins (full review to follow after May labs!)

Currently, we put all these vitamins through his g-tube. After his last big surgery, we were able to drop the twice-daily 90 ml of green bean puree that had been part of his vitamin regimen for years (green beans are great for thickening up short gut poop!), and we had started squeezing the Super D into his mouth, which he hated, but it would be a miserable, hopeless battle right now to try to get him to take all the rest of these supplements orally, twice each day. (Have you ever tasted liquid iron?!)

Swallowing a pill, though — that’s new territory. He’ll still need alarmingly large doses of anything that goes through his gut, but we’re slowly weaning off of his overnight tube feeds; vitamins are the last big hurdle. And swallowing pills could open up new doors. Tube-free doors.

To be continued….

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