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.

Tuesday, May 1, 2012

Over Packed (another crappy conversation!)

My CF family understands, but a word of warning to the rest of  you who aren't used to it - this literally WILL be a crappy conversation, as much of the CF life is centered around bm's and all the joys that go with them.  So if you have a weak stomach, you may not want to proceed!!

Turns out we're not going to Mayo - at least, not yet anyway.  After talking to Vicki this morning and not seeing any progress past the two little nuggets yesterday, Dr P decided that Sax needed an abdominal scan so we can see what's going on in there.  The order was sent to our local clinic to save us the hour drive unless it was necessary.

Sax was GREAT for his x-rays.  I noticed his abdomen seemed a little more distended than it did earlier this morning.  We had to wait a few hours to get the results from Rochester.  And, being the sadist I am, I asked that they send me a copy of the films.  Morbid, huh? But she is sending them via email tomorrow!! Haha!

What did they find?

Poor little man's entire colon is packed full.  Then there is a pocket of gas.  Then his lower intestines are packed full too.  My poor baby :(

I guess the good news is that all the poop is just packed and there is no obstruction.  From the looks of the picture, I'm told, it looks like some of it is quite old.  Which mean it, like his gas the past few days, will stink to high heaven when it finally comes out.

Of course, I asked right away if we're doing an enema or what the plan would be.  Unfortunately because of how unbelievably sticky CF poops can be, Dr P said it would be in effective.  So instead, we're trying something called Golytely.  Normally it's given to adults before a colonoscopy and apparently has an awful taste.  The usual dosage is 1 L over 24 hours, but we're supposed to try to give him 1 L over 12 hours (or however quickly we can get him to drink it).  It can dehydrate him, so we have to give him other beverages in between.  We were told he most likely won't want to eat much and he will probably have some stomach cramping - but it's better than the alternative!  He can be on this up to 3 days, and is supposed to continue it until 'stool is clear' - ie, he's basically pooping water :(

It has a slightly salty smell to it and Sax doesn't really seem to like it much.  We were going to wait until tomorrow to start it, but I think it's worth Mommy missing out on a little sleep to make my little man feel better.  We were told to add some sugar-free KoolAid to it to help with the taste - Vicki suggested Cherry or Grape covers the taste well. 

We are supposed to add it directly to the Golytely one sippy cup at a time.  They also said it tastes much better served ice cold, so we even dropped a couple ice cubes in there.

With doing this 'clean out,' I am a little disappointed though.  We have Sax pretty much potty trained until he started having trouble pooping.  We had to buy some more pull ups (Walgreens brand, which we love!), baby butt cream just in case, and wipes.  We were warned that the first couple will be pretty normal poops for him, but they are going to get looser and looser until he basically will have no control.  This will really help with the clean up part at least!!

The little bit of the Golytely he's already drank tonight has helped - he had his first poopy! It wasn't very big, but still, it's progress!!!! Yay!!!!  

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