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Thursday, May 01, 2014

Cecostomy Update. . .Not exactly what we expected

Well, it's been two weeks since our oldest son had his cecostomy.  The surgery itself seemed to go well, with the only bit of drama afterwards in the recovery room.  And the subsequent days in the hospital weren't too bad, either, especially since our children's wing goes all out to make kids feel comfortable and well entertained!

But after getting home we were a little surprised to find that things didn't unfold as we were assured they would.

For starters, keeping the tube in place was a little tricky as the tape we were given to use seems to 'slide' down the body leaving a trail of sticky goo.  This made everything stick to our poor son's stomach as gunk was everywhere, but his tummy way too tender for us to even oh-so-gently remove it.

Then, there was a bit of a learning curve in doing the whole process. . .it was a bit tricky at first to bleed the tubes without making too much of a mess, then attach the tube from the flushing bag into the tube going into my son without dripping everywhere.  Apparently, I found out several days after coming home, they didn't include a necessary clamp in the 'going home' kit.  That clamp would have made things a bit easier and a whole lot less messy.

But those things were probably just normal bumps along the learning curve.  What was harder was finding out that our son doesn't seem to respond to the flushing solution.  At all.

It's supposed to induce a 'movement' within twenty or so minutes of the solution being administered.  But it's not doing that.  After seeking guidance, the surgeon said to keep increasing the amount going in up to a certain ceiling.  We did that and reached the ceiling with no results.  Well, at least not the ones we're after!

Instead, we have our son's intestines filled with two liters of salty, soapy water as well as what was supposed to come out.  The results of that little daily scenario have been unpredictable and, um, challenging, to say the least.

In short, we are worse off than we were before the surgery at the moment, though I'm still confident that we'll find a way to tweak things until they're working as they should.  In the meantime, we're going to press on, keep our chins up and try not to be discouraged.

Even if that's a little hard at the moment.

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