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.

Wednesday, May 2, 2012

What a Bunch of CRAP! (a continuation of crappy conversations)

For those who may be weak of stomach, this is another one all about the poop - such is the life of a CF mom!!!

Sax had a bit of a poop last night, but nothing compared to his normal.  When they told me he was packed in, I told Vicki I just had to see it!  Yeah, morbid, but I'm getting pretty good at reading scans, so I wanted to give it a go.  I'm sure even if you can't or haven't read scans before, you can probably tell what this is....

All those wonderful bubbles on there are gas :(  Which is not coming out!  He's still not drinking the Golytely with the koolaid, so now we are mixing into his PediaSure, even though that's not generally recommended. But right now, we're in a state of "whatever it takes."  Vicki suggested I give him some more Miralax too, but I'm a step ahead of her on that one!!

After talking to Vicki, and her relaying the information to Dr P, we have a new game plan.

1) PediaSure mixed with Golytely - adding as much as he'll stand.
2) Pediatric Fleet Enema - administering round 1 tonight
3) Pediatric Fleet Enema - administering round 2 tomorrow morning
4) If progress is not being made at that point, contact Vicki's office for a 9am appt Friday
5) Friday morning - insertion of an ng tube and administration of Golytely through that. (note to self - bring jug of Golytely with if we go over so we don't have to buy more)

The hope is that once his colon is cleaned out via enema, hopefully he'll be able to go.  If he hasn't gone a significant amount by tomorrow at 3pm, Vicki will insert the ng tube, then we will have to spend most of the day walking around at Mayo.  That way, if he pulls the tube out, she can reinsert it.  He won't be able to actually come home until he starts going more, and if he doesn't go after THAT, then he'll be admitted and more drastic action will need to be taken.

So I guess we're praying for a crappy night tonight!!!

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