I thought I might be able to blog a bit as we went along, but it turns out that instead of knocking him out for a few hours at a time, morphine makes L feel FANTASTIC and not nap and stay up until 11:00 giggling and telling me all his secrets, so I haven’t had much downtime in the last week! So here’s a brief summary of what happened during surgery, and I’ll try to come back and fill in more as time and L permit.
The surgery we had planned was supposed to be tapering and lengthening – either Bianchi or STEP, as outlined here. The exact method was supposed to be an operating room decision based on what his surgeon saw, and once he got a good look, tapering and lengthening turned into tapering with no lengthening, but with the addition of correcting another problem area we had not seen on imaging.
He decided against the lengthening technique for two reasons:
- He found 105cm of small intestine, which is ENOUGH. In theory, if the gut works mostly as it should. Proportionally, it’s about the same percentage of the typical length of a healthy gut for this age as what he had at 3.5 months when he had only 35cm (20%).
- The lengthening technique only works on dilated bowel, and not all of his small bowel was dilated – only about a third of his remaining (coincidentally, it was the upper third that had previously been intact). That meant that lengthening would not double the length; in reality, it would only take us from 105cm to maybe 120-125cm, which is not likely to make a significant difference.
Since lengthening is riskier and he was happy with the amount of small bowel he found, he just tapered (narrowed) the section that was dilated rather than doing the lengthening procedure.
But he did also open up a stricture (place that’s much narrower than it should be) at the point where small intestine meets large, which had been surgically reconnected in 2013, that was preventing things from flowing through properly and so was causing some backup inside his gut that probably ultimately caused or worsened the dilation, and was almost certainly interfering with normal digestion.
Between those two things he’s hopeful this will make the difference L needs to eventually come off of TPN. We initially felt a little let down, probably irrationally, that we’re going through all this and didn’t actually do the procedure we thought we were doing, and we have concern that this still won’t fix the absorption issues and so still won’t get us off of TPN. But we’re trusting him for now. And we should be looking at this as a less risky procedure that might prevent us from having to do the riskier surgery, with the idea that we may also be able to come back and do a lengthening procedure at some point in the future if necessary.
Recovery from the tapering procedure remains pretty similar to what we expected going in – it’s just less likely to involve additional complications (things that would prolong our stay, prevent the improvements we’re hoping to see in his nutrition, and/or would have resulted in lost bowel in the OR or afterward).
For anyone following along because you may be facing a STEP, Bianchi, or other major intestinal surgery yourselves, stay tuned for a more detailed timeline of the first week post-op. And thank you all, so much, for all of your support through this past week and beyond.