Dropping

Haven't had a whole lot to post lately - which is a GOOD thing cuz that means Sax hasn't been sick.

On Friday, though, Sax had his quarterly checkup.  We got to meet the new CF nurse at our clinic - Marcia.  I've talked to her several times on the phone. And Sax has gotten taller.

But he hasn't gained any weight.

He's actually LOST weight.  His BMI has dropped from 26% to 18%.

Sax is going through another "I don't wanna eat" phase.  And it's kinda scary.  I don't want him to have to get a feeding tube.  But I can't force him to eat.  I try offering a variety of different foods for him to eat, but it seems he wants the healthy foods.  He won't dip his apples in carmel.  He doesn't eat fries anymore.  It's frustrating some days.  I guess the saving grace is that he does drink his PediaSure, so we have been loading that up with as many calories as possible.  I have a few tricks up my sleeve still that I'm going to try.  I'll report back on them if they do work out....

Dr P has decided to increase Sax's dosage to 4 Creon 12 with each snack, 5 Creon 12 with each meal, and 6 Creon 12 with fatty meals.  He also scheduled an appointment with GI for when he has his next appointment.

On the bright side - Daddy got inked again!  I took the kids to the park to play while he got his 4th rose - one for every birthday of Saxon's.  Sax decided it should be purple this time :)



Great Strides 2012

This year we had our biggest team walking so far!!!  THANK YOU to everyone who donated to our walk and to everyone who walked!!!

Our walkers this year:
Me & Scot, Raine & Saxon
Amanda & Luke Buchanan & Cindy, Bryson, & Chelsey
Sam Wasmund & Jeremiah
Steph Terry & Zack
Tim & Steph Putzier & Gavin
Mary Holan
Abbey Jacobsen
Dallas Jacobsen

19 walkers - woohoo!!!

Our goal for next year is to get our team up to 25 walkers!!!  If you want to come join us, you're more than welcome!!!  Even if you don't raise any money, we still appreciate everyone who comes!

As of Walk Day, our team as a whole had raised and turned in almost $1,100!!!  I know we still have some money that is being collected, and some that has been collected and not turned in yet.

The day of the walk was a little chilly but not too bad.  I was kind of disappointed with the shorter route - we didn't get to walk as far along the river, which has always been one of our favorite parts of the walk.

To change things up a little bit this year, Scot dyed his goatee purple to increase awareness.  I tried to dye Raine's but it didn't take very well.  We ended up putting purple spray in her hair.  I dyed mine too, but mine came out looking almost black with a purple tint.  Steph Terry dyed hers too!  Hers turned out better than mine - you could tell hers was purple.  Next year I think I may bleach my hair first so that it comes out really purple.  It'll grow out eventually, so no big deal!

So now I'll leave you with some more pictures from this year's walk.

If you haven't yet, there is still time to donate.  Visit my website at www.cff.org/great_strides/melindachristenson



 On the way home, both my little ones were sleeping soundly.  This was Raine's 4th Great Strides walk that she completed, and Saxy walked almost the whole thing for the first time ever.

Progress!!! And a new plan...

Finally.  Sax is finally making progress!!! 

We thought he was doing so well Friday night when we got home and he pooped 3 times! We figured he would keep going and going and going after being pumped up with 1 1/2 liters of Golytely.

But that was the beginning - and the end - of his progress.

Saturday we had the Great Strides walk, which Sax walked most of, but that didn't help move things along either.  He went once Saturday night, once Sunday (which finally wasn't green!) and - wait for it!!!! - twice so far today - and not green!!! Yay!!  That means the old stuff is well on its way of being cleaned out!

Tomorrow morning Saxon will be getting another scan of his tummy done so we can see how much "stuff" is still sitting in there.  (Yup - they're sending me a copy of the scan, haha!)

We have a plan of attack:  For about the next 10 days, we're going to be giving Sax 2 doses of Miralax - once in the morning, once in the evening.  After that, we're going to a maintenance plan of Miralax 1x per day every day instead of only as needed.  We're being proactive to prevent any more constipation with him.

Hopefully we won't be having many more 'crappy' conversations any time soon!

Waiting and waiting and waiting....

Dr P and Vicki decided at 11:30 we needed to change his dosage from 6 syringes given every 1/2 hour-hour we are going to give him 1 syringe every 10 minutes through his tube.  I went to get Vicki after Sax got his noon dose because when he looked at me as I was adding it, he looked like he was going to throw up on me :(  And he said his tummy hurts now.

We had picked up some lunch about 11 - he got a grilled cheese and bacon sandwich, fruit, and chips.  He's still eating good, and he did pee.  We're pumping him full of OJ and water too to keep him from getting dehydrated.

Vicki just came in after we had her paged.  Sax was complaining that his tummy was hurting.  We're going to give him a break for about a half an hour while the Golytely does it's job.


TMI Moment:

According to our nurse, the way that Golytely actually works is by breaking down all the stool that is packed in there and making it liquidy, which helps it come out easier.  Dr P said everything in there is really pebbly right now, which is why Sax is have wet gas and it is coming out about this color green.  Ewww!!!

As I was typing this entry, Sax started yelling "I got big news!!  I got big news!!"  Daddy asked what his big news is... "I'm going poopy in my diaper!"

I'll bet the nurses were laughing at the site of us - I jumped up and grabbed Sax's hand and took off running down the hallway.  Vicki had said that there was a bathroom at the end of the hall so we wouldn't have to go out to the main corridor.  I yelled "Vicki, where's that bathroom?!?!?"  She started running, with me and Sax running behind, and Scot bringing up the rear with the diaper bag to get the little man in there.

He didn't go once we got in there :(  But his tummy is starting to gurgle and make noise!!  That's a good sign that the medication is starting to work!!!

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....

"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...

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!!!