This is Saxon, our energetic little man who was diagnosed with Cystic Fibrosis when he was a week old. We gathered together many friends and family members and created Strides for Sax. Our mission is to raise money and create awareness for the Cystic Fibrosis Foundation to find a cure for cf. This is all about Sax and our team's efforts for the cause. As of the creation of this blog, Saxon is 21 months old, has been hospitalized several times for pneumonia, and had undergone 3 surgeries since his first birthday.

Friday, April 27, 2012

The Stinky Man! (it's a crappy conversation!)

I put a call in to Vicki today.  That's not a new way to open a post!

I've been a little worried, as a mother should be when something isn't quite right.  And when you can't put your finger on exactly what isn't right, it makes it that much harder.  Sax had been doing so much better with potty training, only having a few accidents with bm's but almost no wet diapers.

Well, this past week and a half, it feels like we've been going in reverse.  He's been hiding and having numerous accidents, both bm's and wetting.  I've talked to a lot of other moms and many assure me that "it's just a phase," which is what I've been hoping.

But then I started thinking....

One of the big issues with CF is the size, consistency, and smell of bm's.  (ok this is gonna get a little gross)  We've accused him of having accidents because quite often he has been smelling like he did.  Extremely potent poopy smells - enough to make this CF mama (who is used to the smell) gag!  He's been grunting and straining a lot when he passes gas.  I noticed that these gas episodes started about the same time he started having accidents too.  I suspected they may be related.  Which is why I called Vicki.

Sax is on omeprezole (Prilosec) which should take care of any gas issues he has.  He is also on a pediatric dose of Miralax 1x per day, which should help with constipation.  I asked her is we should consider a consult with Dr El-Youssef, who is Sax's gastroenterologist.  I wondered aloud if there may be something bound up or blocking in there.  I also wondered aloud to her if maybe when he's straining to push out the gas, he's just pushing so hard that he can't help but have accidents.  He doesn't seem to know whether he had an accident or if it was just gas, and has often told me he pooped when he hasn't, and vice versa.  We know he is absorbing the fat and calories he's getting because his bm's aren't greasy at all.  They have actually been quite hard.

Believe it or not (I didn't know this) CFer's actually can get constipated.  Which is what Vicki thinks is happening.  She thinks the gas we're smelling is old gas trapped behind some extra-sticky poo caught up in his bowels.  That's why it smells so horrible.  Even though he's still going, he's not able to get everything out.  And she agrees that may be why all of a sudden he has started having accidents again.  (Besides the occasional one every kid his age has because they're too busy playing and "forget"to go.  Knock on wood - he hasn't had any accidents in his bed either!!! yay Sax!!)

So now the treatment plan:
  • Lots of water
  • Lots MORE water
  • Double up on Miralax dosage with pediatric dose
  • Vicki will check with Dr El-Youssef to see if there is any added treatment needed
  • Vicki will call me on Monday to see if it helped.
The downside to the increased Miralax is that any "accidents" will be messier to clean up (good thing laundry is pretty much done!!)  On the bright side - he did poo on the potty chair today!!!  Those are few and far between! 

(As I'm typing this, Raine is yelling at Saxon that he pooped his pants - but it's just the gas :(  My poor little guy.)

And to leave you with a laugh, here's his bear wearing his (bleached) underwear.... (don't mind the pile of unfolded clean clothes in the background!!!)

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