Alright, well after complaining to an innocent neuro resident who asked the wrong question when I was a bit grouchy, I ended up getting a referral and appointment with the surgeon who would do Kingsley's cecostomy. I met with the surgeon yesterday. She examined Kingsley. She answered all my question. She asked the right history questions. These finer details really seem like obvious things, don't they? *sigh*
It was a great consultation and in the end, I decided Kingsley is not going to be getting a cecostomy, at least not now. Some of the things that changed my mind are:
1. Proximity to the shunt line. King's shunt tubing ends very close to where the cecostomy would be. This could potentially cause contamination issues, at least while healing. An option would be to move the shunt line, but I absolutely hate the thought of touching the shunt and jinxing the perfect 3 years, 8 months and 1 week we've had with it so far. Don't mess with magic.
2. You 'can't' have a cecostomy and a mitrofanoff. Whether it's truly anatomically impossible or just flat out difficult, I wasn't clear. She drew pictures. Anatomy is not my forte. Regardless, this seems to explain why people pair the mitro and MACE. At this point, we don't imagine Kinger will have a mitro, but I'm not ready to rule it out as an option before he's managing his needs on his own and we get a better idea of what is/not possible.
3. Enema's. Finally. Finally, I had someone equally mistified by everyone's avoidance of the topic. She saw no reason why they wouldn't work for King and said that the very reason he couldn't be treated as a typical GI kid was the same reason these could be good for him... Something everywhere else in the world has figured out except our area, apparently. I wanted to give these a try before surgical options, but was given blank stares and brush-offs at every turn. Now, I'm going to do it! YouTube, here I come! (That sounds terrifying, doesn't it? LOL!)
She also wants to rule out one thing (with a long name I've forgotten) before persuing surgical options, so she's going to do a wee biopsy while he's under for his ortho surgery next month. We will have that knowledge in case we change our minds back.
That's it. We have a follow up with the GI on Monday and then the new adventure will begin. Wish me luck!