L was supposed to have surgery last week. We removed his g-button 16 months ago, but the site where it used to be is still seeping every so slightly, so his surgeon was going to close it up once and for all.

This procedure would have marked an even dozen for him, and this one would have been different in one very significant way: it would have been the first one that truly marked an ending. Every previous surgery — and beyond that, every appointment, every change in diet or supplementation, every tiny thing we’ve ever done to manage his care — has been permeated with “wait and see.” We have lived so much of L’s life in the NOT KNOWING; wait and see if his bowel survives; wait and see how much bowel he has left; wait and see if he can handle this reduction in TPN; wait and see if he can handle just a little bit bigger reduction; wait and see if this tapering surgery reduces his symptoms, if he tolerates these foods, if he absorbs these vitamins, if he can make progress; wait and see, wait and see, wait and see.  

The procedure we were supposed to have last week is called a “closure,” and I had even begun writing what I can only assume would have been a very poignant blog post about what a fitting name that is for the very first surgery we’ve had that did indeed bring with it some kind of closure. There would have been no “wait and see” — we’ve waited, and we’ve seen, and we know without a doubt that he no longer needs his g-tube. We know that there’s always a chance of a setback, always a chance of another surgery, always a chance he will need nutrition support again at some point, but for now, for this moment, this would have been an ending.

But that blog post was drafted in my head only, because even now I know better than to look directly at something that seems to be going so well. We may have moved to the far shores of the great sea of NOT KNOWING, but we still drink of its waters, and we know all too well that when it comes to L’s bowel, very few things are certain.

And so it happened that last Tuesday, L’s closure was cancelled. L had been having belly pain for a few weeks, and since we hadn’t had any imaging in just over two years, we had gone in the week prior for an ultrasound and upper GI (side note: upper GIs are a much easier process when you have a g-tube to push the barium drink through!); and then, when they didn’t like what they saw on the upper GI, went back for a lower GI to get a more full picture. So on our scheduled day of closure, instead of showing up at the outpatient surgery center first thing in the morning, we arrived in the afternoon for an appointment with the surgeon to discuss next steps

At the time of L’s last big surgery, his small bowel was very dilated and he had a stricture where small meets large – which means that section of his bowel had become so narrow he nearly had a full obstruction, preventing things from moving through his bowel correctly, backing up everything behind it and severely interfering with normal digestion. The surgeon opened up the stricture and tapered the dilated bowel, and these revisions helped tremendously. L flew through his recovery. He was off of TPN within six weeks and line free a few weeks after that. That surgery marked THE turning point in his progress; he has been light years better ever since.

But this latest round of imaging showed that the spot in his small bowel where the surgeon had opened up the stricture has re-narrowed, and the section of gut just before it has re-dilated. Not as significantly as it was two years ago, by any means, and he’s not having anywhere close to the same level of symptoms he was having in 2016. But enough to cause some concern, and to postpone his closure while we sort out what we should do.

And so we find ourselves back in the NOT KNOWING. It’s possible — and I want to pause to emphasize here that I don’t currently think this is the case — that his recent symptoms are the result of a new stricture that’s heading toward bowel obstruction and would require another big abdominal surgery to resect (remove) that portion of his small bowel. That would mean another potentially lengthy inpatient stay, another significant recovery period, possibly a brief return to some sort of nutrition support while we wait for his gut to wake up and return to full function.

It’s also possible that this stricture and re-dilation happened shortly after his last surgery, and has looked like this for most or all of the last two years, and we only just discovered it now because he had some belly pain and we happened to take a look. It’s very possible that the recent belly pain was caused, not by an impending bowel obstruction, but by a little bug that he took longer to shake than your average kid would. If that’s the case — and I think it’s likely, given the upswing L has had in the last couple of weeks — he would have had this stricture and dilation through ALL of his best days and months and years to date, virtually unphased by it.

We can’t know. There’s no retroactive belly-cam. We can only monitor where he goes from here. We’re not rushing into anything, at the very least, and we still feel really good about where we are. If he proceeds without any ongoing or worsening symptoms — and I want to emphasize, for anyone reading this who might be concerned, that he has been feeling loads better and has been eating ravenously (we’re currently at a pace of four full meals plus 8-10 snacks/day) — then we may never have to repeat that surgery, or at the very least it may be a long way down the road. 

For now, we’ll wait and see.