Thank you, Anonymous Irish, for your comment in the post below. I'm sorry to hear about your daughter and wish our situation offered more conclusive results for others to draw upon. Admittedly, our docs are at a bit of a loss, but one thing the surgeon has said all along is that they don't want Rory's issue to be carried into her toddler years, where she would eventually start asking us why we have to rectally dilate her to make her go poop. We are very much still in the process of trying to figure it all out, but it is clear that if this process stalls, it will turn surgical. My memory wanes the longer we're out of the hospital, but I seem to recall what seemed like two diffent surgeries that were being considered. The first was simply the pull-through procedure similar to the Hirschsprung's 'easier' corrective surgery. The second was what seemed more like cutting an o-ring and sewing it back together, but instead of a piece or rubber, the o-ring is the sphincter muscle.
At this point, all I can offer with certainty is that Anonymous Irish is right to be investigating this on their own. I just wish this blog was not near the top of the google list, because it demonstrates how little information is available out there. But this advice is for anyone with a loved one in the hospital for any reason: do not assume that your doctors are completely familiar with, or knowledgable about your particular ailment. Question them at every turn, with questions based in fact and research. Make them think about their decisions and the long term ramifications of those decisions. And if you don't like what you're hearing, speak up about it. We have been very pleased with the doctor's we've had on our case, their communication, and their forthrightness about their limited knowledge. But I suspect our continued involvement and repeated badgering didn't hurt our situation either. If you are not pleased with your doctor, then it may be time to get a new doctor.
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