Tune Up 1 Days 4, 5, & 6, Followup, and a Crappy Conversation

Insert disclaimer here because of a 'crappy' conversation!  You've been warned!

Sunday morning, Scot told me he had seen some police-type sedans and SUVs in the parking lot.  Eventually a Sheriff and a City K9 Unit  showed up out there with, literally, hundreds of pedestrians dressed in colorful, dressy clothing and robes.

This is what we could see from Saxon's room.  A friend of mine later messaged me and told me that the Dalai Lama was at the hospital!!  It's kind of exciting to be able to tell him that he was there at the same time, once he's old enough to know who the Dalai Lama is.  We watched the motorcade leave on Monday too.  That was a pretty cool display of flashing police lights and sirens.

Daddy and Sax played with Legos for a while in the playroom on Sunday.  

Saxon also made a special bracelet for me for Mother's Day out of beads and a pipe cleaner.  He was so proud of that bracelet, I wore it for the rest of our stay.  But I love making my little man happy.

That itself was quite a challenge as time went by.  Saxon was feeling better, but he was also getting restless.  His IVs had changed to every 8 hours, but he still had to do frequent vitals checks and 3 CPT treatments daily with his nebulizers.  We compromised by going to the playroom when we had time and watching movies when we were stuck in the room.  I let him play on the Wii for a while.  He LOVES Mario Kart...

... and managed to talk Daddy into buying for him after he got out of the hospital.  He also got his picture taken in an elephant!

There was a tiger picture too, but Sax wasn't interested in that.  Not when there was a Wii just begging to be played.  We had a couple arguments about needing to go back to the room - and eating - and napping - because the Wii was so much more important!  Oh my!!!  But he usually gave in and crashed eventually.

He did NOT want to eat and he did NOT want to drink his PediaSure.  The nurse even threatened to have a feeding tube put in, but that didn't seem to matter to him.

Sax's cultures came back and, in Vicki's words, "his lungs look beautiful."  The only additional culture that showed up was some yeast in his lungs.  So h. influenza, staph, and yeast.  Not as bad as we thought.  The thought is that his sinuses were a majority of the problem.  He even got out of the hospital early!!!  Daddy came to get us on Tuesday instead of Sunday.  Sax was discharged with 3 new prescriptions: Bactrim in pill form 2x per day for 10 days, an anti-yeast pill 1x per day for 10 days, and a nasal nebulizer 3x per day for 21 days

He does NOT like the nasal nebulizer!!!

This is before his PICC line came out.  He was such a big boy when the nurse took it out - didn't cry or anything.  He just said ouch when she was pulling the tape off, but that tape can be pretty painful!  The nurses said they were going to miss him, but how can you not miss (and LOVE) this adorable little boy??

It wasn't much of a surprise when this little boy decided to take full advantage of Daddy being there and getting him ready!

It was nice to get outside and get some fresh air.

He even talked Daddy into taking us to Red Lobster for lunch cuz Scrappy wanted some crab legs - and insisted on cracking them himself....

..... and cracking mine too.  Such a nice little helper.


After 2 days home, we got to take his bandage off.  He was supposed to take it easy, but how do you tell that to a 4 year old boy as active as he it??  Fortunately he didn't have any problems with bleeding or anything like that.  He seems almost as good as new!!

Yesterday we had to go back to Mayo for his post-op followup.  Everything was looking good except....

There's  always an exception.

Except he hadn't pooped in 2 days, and his BMI has dropped by almost 20%.  Once we get him all cleaned out, it will probably go down more.  Dr P ordered an abdominal x-ray, and it wasn't pretty.  He is fully of poop and gas again.  (I'm going to post the x-ray as soon as I get it from the clinic.)

Dr P thinks it's all sitting low enough that we should be able to get him going with suppositories and enemas without having to have an ng tube placed and pumping him full of Golytely again.  This time we are using pediatric suppositories instead of the glycerin ones we had been given before.  I gave Sax one last night and we made a little progress, then a second one this morning, and made a little more progress.  Unfortunately from the looks of how much was on the x-ray, we still have a ways to go.  Sax tried fighting me when it was time to do the morning one, but when I explained that it was either that or the ng tube, he gave in, even though he squealed most of the time.

Hopefully in the next day or so he'll make more progress without needing the enema.  If he doesn't go enough in the next couple of days, I have to get back to the clinic, but we're hoping not to have to go that far!!!

Spring Cleaning

Oh, it's beautiful outside!!  The temps are up to the 30's and 40's this week - which is a big deal in Minnesnowta in February!!  Everyone's getting spring fever and thinking about airing out the house, along with the cleaning to be done!!  Our little CFer is doing a little "spring cleaning" of his own.

I called Vicki again this morning - big surprise for me, right?  Every blog entry I have pretty much starts or ends with "I called Vicki" - lol!  But we love her so much - she's like family, especially for all she's done for us!!  I told her that Sax is sounding a little rattly - very little if any nasal discharge, just a little more rattling in his chest than normal, no fever, appetite is fairly normal (for him). 

She says everything sounds good, if he was bigger, we'd ask him to cough to try to get him to get the stuff up.  She laughed when I said "Saxy cough" and he started coughing on his own (a little game we've been playing to 'teach' him to cough - which is actually really good for him and his condition!!) 

Basically what's going on?  All winter he's been indoor in dry air.  Even with the humidifier running, the air indoors is not as moist in the winter as in the summer.  Spring is actually the best time for CFers because there is SO MUCH moisture in the air.  His nebby is supposed to help him breathe in more moisture, but we only nebby 20 minutes 2-4 times per day.  Now that the snow has been melting, the moisture content of the air is increasing, and he's breathing in more of that moisture, plus he's been running and playing a lot more outside.  The mucus in his lungs has been dry because of the dry air, but now the mucus is starting to absorb the moisture too.  This is causing it to loosen up, which is causing the rattling.  If we get him to intentionally cough, he may be able to knock it loose and get it out!  I asked, "So basically, for him, it's spring cleaning?"  She said she never thought of it that way, but yeah, that's probably the best way to describe it!  The spring air is cleaning him out.

So what's the plan?  Sax is going to get 3 CPT (vest) treatments per day now until he stops rattling.  Vicki doesn't work Thursdays, so if anything changes I'm supposed to call her Friday.  She was also leaving a note with Dr P.  Giving him an extra albuterol treatment is optional - depends on if HE wants it too, or if he seems to need it.  Otherwise, we're back to Rochester next Wednesday for his next checkup.

I'm going to leave you with a few pictures from Friday night - bowling with the kids!! 

Baby Thumpy!!

I was trying to get my little man into his vest and he handed me Raine's baby - "No Mommy!! Baby thumpy!! Baby nebby!!"  He went so far as to try to get out of his vest and put it on the baby.... Oh, I love this little man. He keeps me on my toes.  He's decided now, when he does his morning treatments, he doesn't want to sit on my lap after he's done with the nebby - which is good that he's moving around and exerting his lungs more.

Saxy with his bear and Raine's baby.

That bug he had took a little while to let go.  He was getting better, then got worse, coughing, fever, not eating, lethargic.  We had to make another trip up to see the PA, and made a call to Vicki to keep her posted since we had no idea of what was going on.  Thankfully we didn't have to go back to Mayo!!  They figured it was just a virus that was hanging on a little longer than normal.  He got his appetite back for a few days.  Now it's been 3 days since he's eaten a good meal - it was lunchtime on Monday when he ate a full meal.  It's frustrating, especially since it's so important for him to put on the weight!!!!  I'm hoping that it's a 'stage' and that he'll outgrow it soon!!!!

We have 2 weeks until Sax's next appt in Rochester.  And 2 weeks until Daddy gets his CF tattoo :-)  He's really excited about it - wanted to be sure he gets it before the Walk on May 7th!  I'm not even positive what it's going to be - don't know if he does either - just know he has the time scheduled. Mommy already has a Saxy/CF tattoo....

When it was fresh - purple rose for CF, 4 leaf clover for my little Irish man.

Our fundraiser is all planned - just need to get the posters made now and start hanging them up :-)  We are serving Sloppy Joes at the Aragon Dart Tournament 11am-5pm on Saturday March 5th.  The price is $3.50 for a sandwich, potato salad, and chips and $2.00 for each additional sandwich.  All proceeds benefit the Cystic Fibrosis Foundation. We are still looking for volunteers for 3 hour shifts - 11-2 or 2-5.  Please contact me if you would like to help serve or hang posters!!

The Great Strides walk is coming up on May 7th at 9am.  We walk rain or shine.  We have Strides for Sax team t-shirts available for anyone who is interested in walking.  You can register by visiting our Great Strides website.

Here we go again....

Another call to Vicki today at Mayo.  Sax's head is congested, but he really hadn't been having any discharge. Wasn't too sure what to do, since usually it's running pretty good.  I told her I thought I'd up him to 3 rounds of CPT with 2 albuterol nebulizers and one Pulmozyme.  She said that sounds good, with the addition of a saline nasal rinse.  He took the first one pretty good - a lot better than he did his CPT and nebby treatments!!  He even took his Nasonex without fighting!  (I'm not sure why, but he's been fighting us pretty good on those the last few days.  It might be because he hasn't been napping.  When he hasn't napped, he has a tendency to fall asleep during treatments.  And I think he knows this too....) 

Anyway.  The first dose of nasal spray seemed to loosen things up a little.  His nose started running a little.  It was all clear discharge at first... I kept wiping his nose.  Then I made him mad cuz I wouldn't give him a sucker.  So he decided to blow all the snot he could out of his nose.  And it was nasty green.  Yup, you guessed it!!  Infection, which means more antibiotics... back to omnicef.  Hopefully he won't get the gas and icky stomach he had with the last round.  If I'm lucky, I can get ahold of Dr Ulrich and maybe get him on something different that won't bother his digestive system so much.  The Zantac he's on doesn't seem to help with the situation at all.  He has enough trouble with gaining weight as it is, we don't need to do anything to hinder it anymore.

Sax's lungs seem to be sounding alright.  I think the cold/congestion is all in his head.  He coughs a little and sounds a little gunky, but it sounds like a stuffed up nose and postnasal drainage.  I'm really hoping that's all it is.  I'm worried too, though.  I'm worried he may have polyps again.  When I was trying to get him to blow his nose and was cleaning it out, it looked like the insides of his nose are swollen.  He's already had 2 surgeries to remove them.  We're hoping to be able to go 3-5 years before he'll need them again.  The Nasonex is supposed to help suppress them.  But until very recently, we had a lot of trouble giving it to him.  We go back to the ENT in Feb when we have our other appointments.... hopefully they don't find anything....  Keep our little man in your prayers...

The Next Round?

Today was a full - and BUSY - day for house hold!! First a birthday shout out to my mom (Saxy and Raine's Nana).  Raine is in bed and Sax is about to snooze - we just got home from supper with the fam.

Our first appointment was with the ENT.  Dr Cofer was not there today, but our appointment was with one of her CNPs, Stephanie.  We told her about our concerns with Saxon's ears - how he kept putting his fingers into his ears when we do his vest treatments and how he says that his ear hurts.  We told Stephanie about his 2 ear infections back to back.  She looked in his ears and decided we needed to go to another room where they could get the microscope out to look into his ear. 

It was kind of cool.  She looked in his left ear first.  Everything she could see, we could see on the TV screens mounted over the table.  She said she saw some wax in there and did the best to scrape it out.  She was having some trouble looking around the bend in his ear and thought his tube was actually receding into his ear canal, so she called another doctor, one of Cofer's associates, in to take a look.  She didn't get to his right ear before the other doc came in.

Dr Cofer's associate (sorry I don't remember her name) came to look in Saxy's ears.  First she looked in the left one - and saw wax.  And began scraping it out.  And scraped MORE out.  And Sax started crying.  Then screaming as she got further in.  Then she got a probe and a suction hose.  And dug deeper.  His left tube was COMPLETELY clogged.  We watched - and held down our poor crying, screaming little man who was in so much pain, as she cleared the infection (and blood) out of the tube in his ear.  His poor ear canal was so red and swollen -  the two prior 'minor' ear infections he's had (complete with pus coming out of his ear) had really never gone away - which explained why he was pulling at his ear and why his ear was bothering him during vesting!!!  The doctors in Albert Lea said they were going to suction out his ears - and never did...  

After they cleaned his left ear, they put some CiproDex drops in his ear.  We had those for him before, but since Albert Lea hadn't suctioned out his ear, the drops never got to the tube or the infection to clear it out!! (The drops must be working - he VOLUNTARILY takes them - lays on our laps and asks for drops!!)  5 in his left ear 2 times daily for 7 days.  We got by pretty cheap on the drops too!! Instead of having to go to the pharmacy to get another bottle, they gave us the bottle they had used on him.

FINALLY they got around to looking in his right ear.  He'd been rubbing at that one a little, but not as much as the left.  Again, the doctor found a lot of wax.  But she also found that his tube wasn't even in anymore!!  8 months since his surgery and his tube has already come out!!  I have to take him back on Dec 7 for a checkup for his ears (2 weeks from now) to see if the infection actually has cleared up and to discuss IF he is going to need another surgery to reinsert the right tube and possibly replace the left.  Stephanie was going to plan a consult for Dr Cofer with Dr P and Vicki to discuss the CF aspect of the surgery.   This should be fun :-/  But we are under orders of the Mayo ENT department that we are supposed to bypass going to ALMC from now on with ear infections and go straight to Mayo.

I need to get some sleep... I'll finish the update in the am.

Ok, it's 2 days later - busy yesterday getting ready for Thanksgiving and dealing with the nasty weather (freezing rain and sleet!!) plus a bunch of business to take care of before the holiday.

On to the BEST news of the visit - Saxon's weight gain is GREAT!!  He's up to 13.7 kg!!  Here's a little fun number comparison from his last visit there on Aug 13:

Height: 85.3 cm  (27%)
Weight: 11.3 kg  (12%)
BMI: 15.53 (21%)

Stats 11/23/10
Height: 88.0 cm  (30%)
Weight: 13.7 kg (61%)
BMI: 17.69

He has gained about 5.3 pounds in the last 3 months.  The PediaSure is really helping!!  His appetite is starting to come back too!!  SOOOOOOO happy about that (except, of course, he didn't want to eat any of the Thanksgiving goodies!!)  As long as he keeps his weight up, we shouldn't have to worry about a feeding tube or any other food supplements!!  We are supposed to try to get him to eat more red meat and other iron-rich foods, though.  At his August appointment, they noticed his iron levels had dropped a little, and that is still a concern now.  Sax isn't a huge fan of red meat.  He does like pork, though - ham, bacon, pork loin, chops.... and of course, hot dogs.  I have gotten him to eat seafood in the past, but recent attempts have been fruitless.  Daddy has tried giving him tuna, to no avail.  I have to avoid it since I am allergic to it :-(  One of his favorite breakfasts, Maltomeal, has 60% RDA of iron in 3 tbsp, but he eats more than that when I feed him it!!  And I've discovered that raisins, one of his favorite snacks, is also very iron rich!!  Usually when I think iron, I think protein and greens (yeah, no luck with the greens!!) so I've been researching other options.   I always try to feed him a variety of foods, and whether or not he eats it, he's still given a little of whatever we're having!!  Plus a little extra butter, gravy, salt, or whatever else we can add that's full of calories!!  They're going to check his iron levels again in a couple months to see if there is any change.  I told them this didn't surprise me too much, though, since about every other time I donate blood, and when I was pregnant with both kids, I come up mildly anemic.  If his levels don't increase, he'll be put on an iron supplement.

Sax had to have another chest x-ray while we were there - which came back looking fabulous!!  Which means the Vest is doing it's job!! :-)  Dr P did notice a little bloating and asked if Sax has been gassy, which he has.  This lead to poopy discussions, which they have been larger and more frequent, so this lead to a change in his medication.  With his snack he will be getting 3-4 Creon 12, with breakfast and lunch he's to get 4 and with supper, he'll get 5 (unless, of course, he has a huge, fat and calorie laden meal for lunch, like Thanksgiving!!  We gave him a little of everything - turkey, ham, scalloped corn, green bean casserole, stuffing, mashed potatoes, gravy, and bread, with some pumpkin pie and ice cream for dessert! - and we put extra butter on the bread and the potatoes, and topped the turkey, potatoes, and stuffing with lots of gravy!!) 



Rochester skyline from 16th floor of clinic



Another of Rochester skyline - Daddy looking out window



I like butter!!! :-) We're not stopping him!!!



He only actually got HALF at a time - but Oooohhhh he was excited!! "Saxy donut!!"



Hopefully the next couple weeks will be rather uneventful!! I can tell you, we won't be doing any Black Friday shopping!!  Mom and the kiddos will be chilling at the house, and Daddy has to work!!

We have so much to be thankful for this year - so many less hospital stays and surgeries and illnesses in our house.  We really couldn't ask for more, well, other than a cure!!  But here's to being thankful for Good Health!!



Loves his window perch, especially now that the lights are up!!



Happy Thanksgiving everyone!!

The first of the year.....

It was good while it lasted. 

About a week and a half ago, Raine started coughing.  Then her nose started running.  So Thursday, we took her into Urgent Care because her cough was getting worse, it was keeping her up at night, and her nose started running.  Just a bad cold.  Just postnasal drainage. (one of my LEAST favorite diagnosis!!)  At least they gave her some cough syrup with codeine to help her sleep, and Flonase to help with the congestion.

Tuesday night, Saxon's nose had started running a little bit, but it was clear.  Maybe it's just allergies?  He's on Claritin already.....  Wednesday night it was turning a little yellow.  By the time we got home from Urgent Care with Sissy, it was yellow-green - the beginnings of an infection.  Great.  At least there's no additional coughing!! 

Until Friday.  Mommy woke up with a sore throat and a mild headache - almost a migraine, but not quite as severe.  Not at first.  Saxon started sounding junky.  Mommy decided we're really not going to be going anywhere too much, except Mommy had to work at a show.  Sax snuggled with Mommy quite a bit, then when Raine got home, started getting pretty wild.  She would go into a coughing fit from rough housing, then he would start coughing and his nose would run.  (I'm glad we bought the 3 pack of Kleenex for school so we had the 2 extra boxes at home!!)  Mommy's headache was getting worse and worse.  Mommy wanted to take a nap, but that wasn't going to happen.  Raine went with Mommy to work, and Daddy tried to get the Scrappyman to rest a bit to see if he would feel any better.

Saturday morning. 

Raine is barking.... no, she's coughing.  Sounds like barking.  Her nose is red.... raw.  It hurts from blowing it so much. 

Mommy has a headache - would have to say it's a sinus headache, still bordering on a migraine.  Feeling nauseated.  Can't lay down cuz then I can't breathe.  Supposed to be going to a welcome home party for my cousin... had to send our regards.  My sinuses and throat and body aches almost had me convinced it was the flu.  But no fever.

Sax is congested.  His nose is running pretty steady now.  He's coughing more than normal.  His breathing is raspy.  He tries to cough, but can't get anything up, or just isn't spitting it out.  We added in another thumpy (vest treatment) with another albuterol. 

Daddy had to go get more albuterol since we were out.  Getting some meds for Mommy and for himself too.  We still have an antibiotic on file, so we get that filled for Sax too.  Pharmacy calls - no albuterol refills left!! Oh no!!  Well, I have doc's cell number - I text him, and minutes later he texts back No Problem!  By the time Daddy got to the pharmacy, all the meds are ready to go!  The vest was knocking stuff loose.  Just really wish he would spit it out.....

Mommy broke down and went to get some mentholated cough drops then took some Sudafed PE.  Helped to clear the sinuses a little.  Eased the headache a tiny bit....

Saturday night Saxon woke up in the middle of the night.  No, didn't wake up.  Just started crying.  Crying in his sleep.  Wouldn't wake up.  He was between Mommy and Daddy.  Tried calming him.  Tried waking him.  Eventually he fell back asleep snuggled up against Mommy.

Daddy always gets up too early.  Mommy is more of a night owl than an early bird.  Daddy was up with the kids and had them eating before Mommy was up.  Mommy slept a while longer, trying to get rid of the awful sinus headache. It finally accepted defeat around supper time!!  What a LONG 3 days!!

Sunday was just a lazy day all around.  Supposed to go to a family reunion, didn't want to let g-g-grandma down, but didn't want to get everyone sick or get the kids sicker or Mommy sicker.  We just stayed home.  Sax spent the day riding his motorcycle from the living room to the kitchen and back, or snuggling and napping with Mommy, or snuggling with Daddy. 

Raine hid in her room playing with her Barbies, happy her brother stayed downstairs.  By this evening, everyone seemed to be feeling at least a little bit better.  Hoping everyone is feeling better this week and no more trips to the doctor for a while!!  Sax has 14 days on his, so we'll see what happens!

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!!!

Filling in the Blanks - Part Two!!

I left off with Saturday, cuz it just seemed that entry was getting too long... So now to Sunday.  We went to the Cabin on Sunday to hang out with the family..... The Blomquists and the Jensens..... 

The kids had all kinds of fun playing with the water and splashing each other, even though Saxon didn't get to go in the big pool.  Mommy and Daddy didn't bring our suits, so we couldn't go in with him, and we didn't have any ear plugs for him, which he would need since he had the tubes put in his ears

The kids were having water fights in the pool, and jumping in and splashing all of the adults.  The chlorine was a little strong - Raine's eyes were pretty red when she got out of the water, but it was the first swim of the year, so it will balance out...

Since Saxon couldn't go in the big pool, he decided to play in the wading pool (aka the puppy pool - Bruno Blomquist was bathing in the pool...)  That didn't stop him!!  He was splashing and in and out of the pool, and playing with water guns.  His favorite was to sit on Mommy or Daddy's lap and try to shoot the water gun - but he would shoot himself or us in the face!!  His fingers wouldn't work right to aim the gun away from himself - he had to use his thumb.  But he was having a lot of fun!  This was the first of what I'm sure are going to be MANY weekends at the cabin... and the kids just LOVE playing with their cousins.  It's so nice they have kids close to their own ages to play with!!!  And it gives me and Daddy a chance to sit back and just watch for a while.

It stormed Sunday afternoon for a while and then again Sunday night.  We got home about 9pm, then the power went out.  It stayed out for about an hour and a half, so we couldn't do Saxon's nebby without power!! By the time the power came back on, everyone was asleep or about to sleep, so we just did an extra thumping in the morning.

Monday was a mellow day... we pretty much just hung out around the house, did a little yard work, and went fishing.  Raine had baseball practice so we didn't stay fishing too long... She has her first baseball game tonight.  Can't wait!!

Yesterday, Tuesday, I got a call from Rochester.  Saxon has an appointment on Thursday for a GI consult.  I was concerned, since I had not heard anything back from Dr P.  The person who called didn't know what the results were from the x-ray, so they had Vicki give us a call.  She said the x-rays were fine, there wasn't any blockage, but that's why they were concerned about the weight loss and decreased appetite.  It's possible that it's just normal 2 year old behavior, but we would prefer to be on the safe side.  They said a GI specialist may find something that they missed since the tummy is their area of specialty.  We have to be at Mayo 9 at 745 tomorrow morning, then we have an appointment with a dietician afterwards.  Hopefully we should be done by 10, but ya never know!! I won't hold my breath on that!!

Undiscovered Talent

I tried my best to wear Saxon out yesterday. And Raine. We walked to pick her up from school, then walked around the lake which is about 5 miles. Fresh air is good for the little man!! Unfortunately, the pollen counts are high and Sax is 'predisposed' to having allergies. Scot has them, and I only had hayfever, but now have developed allergies. Our house is MISERABLE when everything is in bloom!!

Saxon is done with his TOBI for now... 21 days with the TOBI nebulizer. We haven't tried out the new nebby the pharmacy sent us because we still had some of the last TOBI left. We don't think Saxon will tolerate the new nebby very well either. I actually don't think he's old enough to understand how it works. With the current nebby, he puts the end of the cup in his mouth and inhales the medication, or we put it by his face as he's drinking his sippy cup. It takes about 15-20 minutes to do his nebby. With this new nebby, it's inhaled nasally and supposedly only takes a few minutes. However, he has to inhale the medication and hold it in for a minute. He's not going to be able to do that yet.

Starting tomorrow, we're back to Albuterol nebby's twice a day. I'm not sure if we're supposed to be doing the Pulmozyme again or not. I guess I should call Vicki, our CF nurse in Rochester, tomorrow to see what she thinks. Hopefully the answer will be no. Saxon's medical regimen is:

3 Creon 12 capsules with each meal/snack

1 ml Zyrtec once daily

1 ml Zantac 3 times daily

1 vial Albuterol 2 times daily

1 ml AquaDEKs multivitamins daily

Plus his couple of beatings. He's actually pretty low for his quantity of meds right now... Which is a good thing!!!

Well, my DARLING, ADORABLE little man has found a way to SERENADE his mommy.... He played his song for mommy last night - kind of an early birthday present. His instrument of choice - a TEAPOT. Yes. A new purpose for a girl's playtoy. He 'plays' the teapot by putting the spout into his mouth, and humming/yelling through it. And "shhh" means "crescendo." I know Saxon is just practicing for his big debut. We have a musician on our hands! His sister thinks she's a singer, so maybe the kids will start their own band!!