Showing posts with label cecostomy. Show all posts
Showing posts with label cecostomy. Show all posts

Monday, January 13, 2014

It's A Big Deal

A couple of months ago I was out at Target with Kingsley and being unfamiliar with the store, we wound up in the underwear aisle. Kingsley, naturally, started screaming and cheering the fact that there was Thomas the Train... underwear. My heart squeezed. I turned him quickly and got out of that aisle. Fast.

Underwear is like the Holy Grail in our world. Social continence - the ability to stay clean all day long, though with non-traditional methods - is a huge quest. The very very bottom of the spinal cord is the part that controls continence, so nearly everyone living with SB has to work to achieve social continence in some form or another.

I have probably said far too much about our quest for social continence ;) It has been a battle for about a year and a half now.  I have been googling and googling and emailing and messaging and reading and consulting and trying and trying and trying again.

And then this weekend, Kingsley wore underwear all day. And all day today.

Underwear. 

All. Day. 

Kingsley. 

Do you know how long I've waited for this day? It was pretty darn exciting. 

I kind of feel a teenie bit like we are cheating on the underwear thing. While our #2 issues have been completely, totally resolved (ALLELUIA!!!), the brand new #1 issue is still there. I can't figure it out, but as the timing was exactly when we figured out #2, it must be related. So, anyway, to address that business, I got Kinger what I call men's maxi pads. They're Gentlemen's Incontinence Pads, but let's be real - they're blue and shaped like a pear instead of an infinity loop. Whatever you want to call them, they are significantly cheaper than diapers. Although, it was more awkward buying them than when I stock up on KY (which is not a wink wink thing, it's for Kingsley and I do buy about 10 tubes at a time and get a lot of averted eyes by cashiers). 

So, with one of those guys hidden in Kinger's Toy Story unders justincase, he is good to go! 

He is still going to have to wear a diaper at night for the foreseeable future until we get that stuff worked out.  He doesn't actually care what he's wearing or even notice. I mean, other than the big underpants parties we had all weekend. ;) 


However.

As thrilling as this is, it is not a permanent fix. The things we are doing now, the way we do them, Kingsley cannot be independent. It is different for every person, there are so many relevant factors - gender, leg/body functioning, age, continence issues... but we have come to the conclusion that for Kingsley to be both continent and independent, surgery is his best (and likely only) option. This has not been an easy decision, despite my previous thoughts on it. The procedure(s) we are investigating are far more invasive and scary than we first thought. The recovery will be long and unpleasant. The risk of complications are real. But, we have yet to find someone who regrets having the procedure done. The only regret we have heard is the regret that it wasn't done sooner, when they were younger. I don't know when we will be having it done, but the decision has been made. The next chapter will begin. 

Thursday, October 10, 2013

... And Then My Head Exploded

I wasn't exaggerating when I said our lives revolve around poop these days. It still does. Since meeting with the general surgeon a couple of weeks ago, I have also met with the GI again, Kingsley's paediatrician, and today King's urologist. It's been great, and by 'great' I really mean mind-bogglingly ridiculous. 

Here is a breakdown of what we are discussing:

GI: do a cecostomy and do it now. Stop messing around and cut to the end where this happens either way. No MACE, MACE is bad. Maybe a mitrofanoff. 

Surgeon: no cecostomy, there are too many risks. MACE would be better, but try enemas for now. 

GI: what?? The risks are minor. Don't do enemas, that's a waste. Try senna for now [sidebar: worst advice ever. That was an ugly, ugly week]. 

Paediatrician: Cripes. I can send you for a third opinion, where would you like to go, who do you want to see? Are things better in Toronto? [another sidebar: is there anything better than a dr that admits this isn't their specialty and refers to experts whenever you ask? No. There isn't <3]

Urologist: cecostomy? Never. He needs a MACE and I will do it. And maybe the mitrofanoff, we will see, but likely [insert awkward moment of him trying to explain why, LOL!!] And yes, do the enemas now. But get a MACE soon. 

Which is about the time my head exploded. What do we do? Whose opinion do we trust? I have no idea. At this point, we are going to hang out with PEG until after the casts (that he gets Tuesday) come off. Then we will try enemas. Then we will start talking about a timeline for the MACE and investigate the mitro further. There is some security in knowing that this is somewhat status quo in the SB world. 

Good grief. Kind of makes me want to punch myself for ever whining about potty training Rach and Cor. If only a sticker chart and Strawberry Shortcake underpants could solve these problems! 


(not that you shouldn't whine about how awful potty training typical kids is. It really is horrid. Worst 2 months ever. Kind of. Well, whatever, it sucks, I remember.) 
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