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.



Showing posts with label enema. Show all posts
Showing posts with label enema. Show all posts

Friday, May 4, 2012

Sax's First Tube (hoping for a crappy day)

Well, we are at the hospital, which means there was no progress at home with his Golytely and enemas.  Sax didn't want to come here (we didn't really either, but as a parent you do what you gotta do for your kids).  On the way he had a few (excuse the term) "sharts" but nothing other than that. 

The plan for inserting the ng tube was for Sax to sit up with one of us holding him and Vicki would just slide it right in his nose and down to his tummy.

Yeah right! Our kid isn't going to be that easy!!!

It turned into me wrapping him (swaddle-like) in a blanket, Scot holding his legs down, a nurse holding him from behind, and me pinning down his hands while he kicked, screamed, fought, and spit at us!  Man does this little boy have spunk!!!!



We have the tube in now and have administered 4 oz of Golytely through it.  Sax has even been helping to insert it into the tube.




Every half hour, we're going to insert another 2 1/2 oz, so hopefully we'll be making progress soon!!



Right now, him, Daddy, and Buppy are snuggling on the couch watching Cars.  This exam room is pretty much gonna be our room as long as we're here today. 



At least we have a beautiful view.



Where the river is in this picture is pretty close to where our Great Strides walk is going to be tomorrow

Please keep him in your prayers....

Thursday, May 3, 2012

"Going" Nowhere (more crappy conversation)

**Disclaimer** this will be another "toxic" conversation about the joys of cf poopies - Nose plugs required beyond this point!!

Last night we implemented the new plan of attack.  Sax was drinking the Golytely with his PediaSure.  After Daddy got home and we'd eaten supper, he had a small, very mucusy/stringy poopy.  A little later we gave Sax his first enema.  He didn't fight us too much - he laid on a towel on the bathroom floor, Daddy held his arms and legs in place, and lucky Mommy got to administer it :/  Not on my list of favorite things to do, but right now I'd do about anything to make my little man better.

After a few minutes of laying on the floor, Sax wanted to try sitting on the big potty - until he got scared.  So we put him on the potty chair.  He did end up getting some out - but just a little more than the amount of liquid we put in :(  To get him to stay sitting on the potty a little longer, I decided he needed a haircut.  The weather is getting warmer anyway, so it's time for a summer shave.

Posing to show off the new cut :)


Daddy bribed Sax with beef jerky to get him to drink more of his "kool aid" plus he drank another whole glass of PediaSure.  We thought for sure we'd be up all night cleaning up diapers!  While snuggling with Daddy, Sax was acting like he had to go again.  Poor little boy went to sit on the potty even though he'd already gone a little in his pull up - but it wasn't what we expected to find.  Instead of super stinky poo, we found a ball of mucus!  I hate to think how much of what we saw on the scan is actually just that super sticky nasty mucus!!!

So there was no progress made the rest of the night last night.  For as much 'stuff' that is crammed/packed in there, he should be pooping a whole lot more than what he's done!  I still don't know how he's not in pain!!!  He's still eating decent!  If by 3pm he hasn't made more progress, then we go the next step and we'll be at Mayo tomorrow.

From the motherly standpoint, this is honestly freaking me out.  There are so many complications that can arise from intestinal blockage.  They are saying he doesn't have any blockage from what they can see, but with how incredibly bound up he is, I'm not completely sure.  It sucks anyway when there is something wrong with your child and you can't do anything about it, even if it doesn't seem to be causing him any pain or discomfort at this point beyond a low-grade fever.  But with everything that happened with Baden and his intestinal blockage..... enough said...

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!!!