Monday, June 3, 2013

Surgery #6 ...and Maybe #7

Holy crap, right? He hasn't even had his 5th surgery (the hamstring/Achilles/foot release in the fall) and already we are planning more. It's like booking a years worth of vacations, only a lot less fun. But it's free, LOL! 

We have a whole lot to think about, but the ball is starting to roll on a surgery called a cecostomy. This is where you might have to Google while I convince myself that by not explaining it, I'm respecting his privacy. ;) It's going to resolve all of the poop woes. We hope. 

This is where my head feels like it might explode. I feel like for the last few months I've been throwing my hands up saying that if a c-tube is inevitable, then let's cut to the chase and just do it. Now, his specialist was like, 'it's inevitable, let's do this!' And I'm balking. 

Here is where my head is at:
Is it really inevitable? Really really? How really really? Is the alternative constantly monitoring and ruminating about nothing else? Because I'm not down with that. 

I can't find a downside, risk-wise. I think things will need to be changed out, it's a surgery, so the usual complications would be at play. But he's young, he heals well, and at this age, he will barely remember. 

It feels like a big decision to be making FOR him, but his GI described it like getting his ears pierced - you can always take out the earring and let the hole grow back in. 

Doing it this young (I think I'd aim for next winter after he's done with the ortho fun) was unexpected, but I'm all for skipping more med experiments, enemas and anything else that may cause damage and frustration, only to end up here in a few years, exhausted. 

While we were there, he also tossed out the idea of doing a mitrofanoff (Google) at the same time. THAT was not even on my radar. Jeff is all for it and I am not so sure. At first, I was an immediate NO! Because we don't have uro issues, he's all good and managed, so let's not fix what's not broken. I may come around though. There are some pro's to that as well. 

He will have just turned 4 when/if we do this. He will have 8 months to adjust to this before he starts school. Doing it then will also mean I will still be at home with him, since I'm going to have to find myself a job or something when all three kids are in school ;) 

I'm a little bit freaked out right now. I'm trying to remind myself that this isn't really making him more atypical since the way we deal with these things now is not at all typical, it's just different. Different is scary. Scars were once scary. Shunts were scary. AFO's, wheelchairs, catheters, drugs with long names- all scary once upon a time. This will be a piece of cake. One day. 

If anyone has any experience with these, any good stories or glaring reasons why we should stop all contemplation, then please, let me know. 


  1. Most of the families I know around here have both surgeries done at the same time. Our friends daughter had hers done around 6 years old (I think) and she said she would do it again in a heartbeat! Both surgeries have really improved her daughter's ability to be independent. She did say that the recovery was tough and it was perhaps the most difficult, time intensive, surgery recovery they've had-- but like I said, she would do it again in a heartbeat. We actually just had lunch last Saturday with a family whose daughter had both procedures done 2 weeks ago. She is still recovering but was happy and wheeling all over our house. I think it's a good move and is becoming the standard.

    Still stinky though. Surgery is never ever fun, and somehow bowel/bladder surgery feels like an even bigger decision because it changes your routines. Even with all that I think it's a great option!

  2. I have no good advice to give other than to tell you that I FELT THE EXACT SAME WAY when we found out Liv needed a vesicostomy. It was only surgery #3 but I had such a hard time with it. I have no idea if the Mitrofanoff or MACE are in her future but I'm sure I will look back on this post for advice! I look forward to hearing how Kinsley does with whatever you decide!

  3. You've been quiet for a while, it is nice to see you posting again! :) I have been thinking about you and your new neighbourhood! Hopefully the work will all be done soon and you'll get your privacy back. I'm sorry to hear that Kingsley's surgeries are starting to stack up. I did Google...and neither seem that nice to do. I'm a bit confused how the one works (I understand the role it plays, just not how it does it...but maybe some things are better left to the imagination?! ;)) and run along the same line of thinking as you do regarding the other...if it isn't broke, why fix it? But this is honestly totally out of any issues we've dealt with.

  4. I cannot wait to come home so we can talk about this in person. I googled it all so I am somewhat familiar but I'd love to talk about the pros and cons with you.


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