Wednesday, September 25, 2013

I Changed My Mind

This is another one of those posts where I use big words and talk about that stuff no one likes to talk (or read) about. So... Last warning here...




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! 


  1. Enemas have been a good thing here with Mason. Not the funnest thing in the world to do every evening, but helpful. One thing that really has helped make the whole thing safer with his balance issues is a Bumbo Toilet Trainer seat, we got ours on Amazon. It gives him more support so he's not falling or diving off the toilet. We use a cone enema setup and start on the floor on a towel right by the bathroom. He lays on his side and we put in the fluid and wait 5 minutes. Then we transfer to the toilet and out it all comes eventually.

    And totally hear you on not messing with a magic shunt that is working! Our docs are talking about messing with Mason's while we wait for imaging to check for a tethered cord. Not happening. Nope. Sorry. I don't care what degree you have, we will wait.

  2. It is a good thing to put off surgery...right?! That's how I read it and how we live in the world of E... I was nodding my head in agreement...STAY AWAY from the shunt!!! It is totally off bounds here too. No sense risking anything. I hope this other options works out and helps Kingsley! Good luck!

  3. If you have any questions (no matter how gross!!) I'd be happy to answer them! Honestly, the enema is kind of annoying, but you'd be amazed how much I'm able to get done with my kid strapped to a toilet for a half hour every other night... It's kinda nice. Have you looked at the peristeen system? I don't know if it's even available there, but it looks great!

  4. Great! It is so frustrating when you know what you want and what you should be doing and you can't get your healthcare team on your... team.
    I think if I didn't just start on my own we'd still be working. And after a couple of bumps in the road we finally have an appointment to follow up and change what we are doing... in December.
    But the enemas are 90% working great. I think it's a great step and ask away if you have any questions!
    From Lauren above the Peristeen system is available in Canada, but it's expensive.

    Good Luck and I'm glad you are following your gut!

  5. I am also happy to answer questions. There was lots of potty time texting going on with Leigh, Lauren and Katie when we first started:) once you get the hang of it, it's not too bad!


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