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 :)



Road to Recovery

We got to go home late Thursday morning.  I was too tired to update then and have been trying to catch up on sleep and taking care of a crabby Saxy since we've been home.  Dr Cofer said they removed a lot of polyps and 'gunk' from his sinuses, put tubes in, took a sample from and flushed his lungs, and are culturing the samples from his lungs and his polyps.  Once the cultures come back they will decide what antibiotics to put him on.  She figured he will probably be on TOBI again for a while. 

Sax is having some discharge from his ears still and a little bleeding from his nose.  He's supposed to be taking it easy, but what 3 year old does that???  When he's playing too hard, or gets worked up and crying too much, it makes his nose bleed.

Some of his meds have changed for now:

At least until his next check up, no:
Nasonex
MADdy nasal rinse

New meds:
Saline nasal spray (4x per day)
Pain reliever/fever reducer (every 4 hours)
Medicated ear drops (5 drops, 2x per day, for 5 days)
Albuterol Neb increased (4x per day)

He's supposed to go back for a checkup in 2 weeks, then a repeat audiogram in 6 weeks.

Sax took his Buppy in with him for surgery, so Buppy got a new 'collar' for surgery (since the wrist band wouldn't fit his arm.)  When the nurse took the IV out of Sax's hand, though, he didn't put pressure on the hole right away and blood gushed across Buppy's back.  I got most of it cleaned up.  Buppy is going to need a bath.  But here is a picture of him and Buppy snuggling on the couch once we got home....

Hopefully, once the swelling goes down from his surgery, it won't look like he has 2 black eyes all the time anymore.

Hopefully he'll be healed enough to go outside and play too.  We've finally gotten snow!!  Can't wait to take the kids sledding and build a snow fort :)

(Hoping for) A Merry Christmas

Well, Saxy went back on antibiotics on Thursday.  He was getting pretty congested and had a lot of green nasal discharge.  He was breathing pretty loud at night and was running a low grade fever too.  Not fun!!!  He's on Omniceph, which seems to work pretty good.  We have to get it refilled about 10 days after getting it filled because once it's mixed, it's only good for 10 days.  He seemed to be feeling better after only 2 days, so that's a positive sign!!

But over the weekend, he started acting different....  We went shopping on Sunday, and he was getting crabby every time he passed gas.  And it's large amounts of gas, like an adult would pass.  It seems to be hurting him.  He hasn't been having as many bm's since we upped his enzymes, which he's not supposed to, but they have been VERY large.  He tells us he 'pooped' every time he gasses, and he cries.  He cries in pain for hours, and is inconsolable.  I called Vicki before doing anything since we can't mix meds with everything he's on already.  His Zantac should be taking care of the gas.... Vicki thinks that he's not completely emptying his bowels, so back on a regular dose of Miralax to help move things along.  I'm supposed to call Vicki back in the morning to let her know how things are going.  If he's still gassy and upset a lot, we may have to take him in to have an abdominal x-ray to make sure there's no blockage.  We will be able to do that here with Dr Ulrich, our regular doctor. 

Here's to hoping we don't have spend Christmas at or in the hospitals!!!

What does it all mean??

After some recent incidents in our lives, I've come to realize that I have based this blog on an assumption. In the header, I talk about Saxon being diagnosed with Cystic Fibrosis. But I guess I never really explained what cystic fibrosis IS!

If you're looking for the exact meaning and want to take the time to sort it all out, there is a great website that can explain it all to you. For those who don't want to look it up on your own, I'll help you out a bit.


Cystic fibrosis is an inherited genetic disease. We receive one gene from each of our parents. If a person receives one copy of the mutated gene that causes cf and one good gene, the person is called a cf carrier. If a person receives 2 copies of the mutated gene, one from each parent, the person has cystic fibrosis. In the state of Minnesota, we are fortunate enough that newborns are automatically screened for this and about 50 other genetic defects. If it weren't for the screening, we wouldn't have found out so soon!


The defect in a person such as Saxon causes him to sweat out most of the salt in his body. The mucus in his lungs and organs is very thick and very sticky. It clogs his lungs and blocks his pancreas. As a result, kissing him tastes like kissing a potato chip. His skin tastes salty, especially when he sweats. He often coughs. He is very susceptible to respiratory infections and a simple cold can easily progress into pneumonia. This is why when Sax was in daycare, he was almost always on antibiotics. The clogging of his pancreas is what is causing his weight issues. The mucus doesn't allow his pancreas to release the enzymes needed to break down and absorb his food. This explains why he has so many bowel movements when he was first born - he WASN'T ABLE to absorb what he was eating! The balance of enzymes is very important - too few and he doesn't absorb enough, too many and he gets bound up.


Maybe this will help. A listing of all of his most frequent medications, and what purposes they serve.

Albuterol - What's that? A bronchodilater. It relaxes the muscles in the airways and makes it easier to breathe by increasing the air flow. More commonly used for asthma relief.
How taken? Nebulizer medication
Dosage - 1 vial once daily. When respiratory infections/illnesses/allergies are present, 2-3 vials daily.
Cost? - Approx $9 per month

ABDEK/Vitamax - What's that? Multivitamins. Since so much of his food is not absorbed, these vitamins supplement his daily menu.
How taken? Oral solution
Dosage - 1 ml twice daily
Cost? - Approx $15 per month

Claritin - What's that? An antihistamine. It helps to relieve sneezing, runny nose, and itchy, watery eyes. This medicine is used to treat the symptoms of indoor and outdoor allergies.
How taken? Oral solution
Dosage - 1 tsp once daily
Cost? - Approx $13 per month


Creon 12 - What's that? A pancreatic enzyme preparation consisting of pancrelipase, an extract derived from porcine pancreatic glands. Pancrelipase contains multiple enzyme classes, including porcine-derived lipases, proteases, and amylases. 12,000 USP units of lipase: 38,000 USP units of protease; 60,000 USP units of amylase capsules have a brown opaque cap with imprint "CREON 1212" and a colorless transparent body. The shells contain black iron oxide, gelatin, red iron oxide, sodium lauryl sulfate, titanium dioxide, and yellow iron oxide.
In English please? Basically, it's pig enzymes that Saxon has to take orally every time he eats. The enzymes help him to break down and digest his food, and also helps break down any mucus he swallows (although not completely). They come in 6,000, 12,000, or 24,000 units. They are effective for 40 minutes before he needs to be re-dosed. The dosage is based on weight. He upped to the Creon 12 when he was at 6 of the Creon 6 - less to haul and less capsules to crack open!
How taken? We open the capsule and dump the granules into applesauce (the acid from the applesauce helps the enzymes do their work) and he takes them orally
Dosage - 3 capsules with each meal or snack
Cost? - Approx $800 per month

Exlax - What's that? Stimulant laxative to relieve constipation - taken with Miralax to stimulate bm's.
How taken? Orally - chewed
Dosage - 1/2 piece of chocolate approx 1-2 times per week
Cost? - Approx $6 per box of 24


Miralax - What's that? Laxative to relieve constipation - non stimulant. Taken with Exlax
How taken? Powder added to beverage -orally
Dosage - 17 g approx 1-2 times per week
Cost? - Approx $6-8 for generic


Nasonex - What's that? For adults and children aged 2 years and older, NASONEX® Nasal Spray is approved to treat seasonal (outdoor) and year-round (indoor) nasal allergy symptoms. At least, that's what it's GENERALLY used for!! Saxon has used it per the referral of Dr Cofer, our ENT, since he was 1 to keep his nasal polyps from reforming.
How taken? Inhaled - Nasal spray
Dosage - 1 spray per nostril, 1x per day
Cost? - $200+


PediaSure - What's that? A vanilla shake that provides protein, vitamins, and minerals needed for healthy growth and development.
How taken? Orally - in place of milk in sippy's
Dosage - 3 cans per day
Cost? - Approx $50 for a case of 24


Pulmozyme - What's that? A synthetic protein that breaks down excess DNA in the pulmonary secretions of people with cystic fibrosis. Pulmozyme is used to improve lung function in people with cystic fibrosis by thinning pulmonary secretions and reducing the risk of respiratory tract infections.
In English please? It breaks down the film of dead white blood cells left behind after CPT and mucus clearance, and thins out the mucus still present to help the CFer cough it up.
How taken? Inhaled - nebulizer medication
Dosage - 1 vial daily
Cost? - $1600-$1900 per month


Tobramycin - What's that? Tobramycin, better known as TOBI, is an aminoglycoside antibiotic used to treat or prevent certain kinds of bacterial infections in the lungs. It will not work for colds, flu, or other viral infections. Often used for treatment of pneumonia.
How taken? Inhaled - nebulizer medication
Dosage - 1 vial daily when ill with pneumonia/respiratory infection
Cost? - $4,000+ per month


Zantac - What's that? A type of antihistamine that blocks the release of stomach acid. It is used to treat stomach or intestinal ulcers. It can relieve ulcer pain and discomfort, and the heartburn from acid reflux. Most CFers suffer from some acid reflux
How taken? Orally
Dosage - 1 ml twice daily
Cost? - unsure - once I know the cost of it, I'll update this!!


I'm working on a page of "key terms" which should be coming soon!

Any other questions you are curious about, just ask!!

The only stupid question is the question not asked!!!