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!!!

Checkups for Sax and baby

Haven't posted in a while, but fortunately there hadn't been anything to post about!!  Saxon's checkup 3 months ago was good, with the exception of him needing to gain weight.

Yesterday we were back in Rochester for another 3 month checkup.  Unfortunately this appointment wasn't all we had hoped it would be.  Our first appt was with x-ray.  Of course Daddy had to take him since Mama can't go in there with the little one on the way!!  Sax did NOT want anything to do with the x-ray - he screamed and fought Daddy enough that he had red spots under and around his eyes.  As soon as he was done with that, it was on to see Vicki and Dr Henry.  Normally we would be seeing Dr P, but he is out on medical leave.  He should (hopefully) be back sometime in Oct, but they're not positive.

Sax's weight is at 14.4 kg, up only .1 from his last Rochester visit, but up .4 from his 3 year checkup here in Albert Lea.  Again we were told to fatten him up!!  (We figured that one is a given.)  He fought the throat culture like crazy too, when he had been doing them so well.  Dr Henry pulled up Sax's x-rays when Vicki was done with him, and the films didn't look too well.  She pointed out how there was more infiltration in the upper lobes of his lungs and along his heart line.  (For now we are upping Sax's CPT to 3x per day and adding in 5 minutes of manual CPT on each side for those upper lobes.  The way his vest fits, the upper lobes are where the straps are, so there isn't as much compression in that area.  Hopefully this will work!!)  She said there was a spot on the lower part of one of his lungs that she was concerned about.  Dr Henry said the spot is either a dense clogging of mucus, or could also be a spot where part of his lung has collapsed.   This showed up on the May x-ray also, I guess, but Dr P never mentioned it.  Sounds like for now they are just going to watch it.  Sometime next week we should have the results back from Sax's throat culture.  After discussing the awful effects of Zantac with friends on CysticLife, we've also gotten Dr Henry to give Sax a prescription for Prilosec to see if that will work.

Today Mama and baby had a checkup - 21 weeks, 3 days.  We found that the pocket of blood has not dissipated at all - looks to be about the same size it was before.  Mama is still bleeding.  Baby weighs about 1 lb now, though, is the right size, and the baby's heartbeat is strong.  We weren't to excited to find out the baby still has echogenic bowel.  This could mean either 1) the baby swallowed blood and it's taking a while to digest, or 2) it could be a precursor to meconioum ileus, which would mean the baby would have CF.  If it is meconium ilius, the baby will likely need surgery right after birth.  Of course, the surgery would have to be done in Rochester.  We have told our doctor here, Dr Yahya, that we would like to have the baby in Rochester.  We have already been over to see a high risk specialist there, Dr Rose.  According to Dr Rose, the game plan is that we will start steroid injections at 24 weeks to help baby's lungs develop.  Because of the complications I have been happening (which, according to Dr Rose, are rather rare) he said it is quite likely the baby will come before 34 weeks.  He also said they would be following my pregnancy a lot closer and we would have frequent ultrasounds.  I need to call him to see what the plan is.  Albert Lea doesn't seem too willing to follow what the specialist says.  We may end up bypassing Albert Lea altogether depending on what Dr Rose says.

Hopefully we'll find something out soon and get everyone on the same page.  It's hard to manage care when people aren't communicating and the right hand doesn't know what the left is doing!!

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.

Another Antibiotic, Another Illness

Thursday, after all of our running, Saxy and Mommy made a trip the the clinic.  His nose went from running a little and his head was congested, to blowing out large amounts of green mucus and wheezing.  Any other day, I would just call the doctor to get a script for the antibiotics, but the wheezing had me more concerned.  After talking to 3 different people on the phone, we had an appointment scheduled with one of Dr Ulrich's PA's for 10:45 am.  Much shorter wait time than going through Same Day clinic or Urgent Care, and we get a CHOICE over who we see, which is great. 

This PA Michael seemed pretty good like the last PA we had (Andrew).  He listened to all of Sax's symptoms, what treatments we've been doing, and what my thoughts and suggestions were on his illness.  Sax was really good about the exam - he even climbed up on the table by himself!  Michael looked in his ears, mouth, and nose and listened to his lungs.  He said Sax's lungs sounded ok and he thought any sounds he may have heard were made by the postnasal drainage.

We requested that Saxon not be put on Omnifec this time.  The Omnicef DOES work, but it also causes him not to eat and causes a lot of bm issues... and we've have success in the past with Augmentin, so that's what we decided to go with - 2x per day for 10 days, along with 3-4 vest treatments per day with Albuterol for the first 2-3 and Pulmozyme with the last.  At first it looked like this all was going to work... not so much now.  Many other CF moms suggest we give him probiotics to combat the bm issues - well that's all fine and dandy - IF he would EAT!  It doesn't matter what foods we try giving him if he's not going to eat them!!Last night was a really bad night for Sax... He kept Mommy up until 2am... If he decides to nap today, I think I will have to nap too...

Now, in fundraising, we are having a StridesForSax team meeting tomorrow night to plan for our upcoming fundraiser on March 5.  We are serving food for the annual Aragon Dart Tournament.  The agenda is to discuss and set pricing for the meal, make posters, and discuss any further fundraisers we may want to do.  It's also time to get registered for the Great Strides walk.  Just go to our site to register to join our team today!!  Or, if you would rather just make a donation, you can do that here too!!  We're hoping for a good turnout!!

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!!

Happy Fall!!

Happy Fall to all!!  It's in full swing, the cold has set in and is here to stay.  I haven't updated in a month, but not much has been happening.  Sax has been doing well.  He's had 2 ear infections, but that's it.  No colds, no coughs.  The last few days he's been getting crabby when we nebby and vest him.  I think his ears are bothering him a little because he's putting his fingers in his ears or covering his ears when he's been vesting. :-(  I have been debating if I should take him in to have his ears checked, but we're going to Mayo on Tuesday for his next series of checkups.  We are seeing the ENT, along with all of our normal doctors and nurses.  We have to be there by 9, but we may have to leave early.  We're being forcasted sleet and freezing rain - I don't know if I'm ready for that!!!  Especially with me driving back and forth to Owatonna on Monday nights for my night class... 35 is a BAD one for winter driving!!!

Sax seems to  be keeping his weight up pretty well!!  He's started eating a little more food, and he LOVES his PediaSure.  He's chubbing up a little bit.  We have to ask our doctors about his diet - I think we're seeing the dietitian too.  The WIC nurse has been telling me not to give him so much butter, that he should be getting more canola oil.  I don't think we have anything to worry about with the butter.  I'm going to ask about it anyway.  I'll post after his appointment on how things go.

I'll leave with a few Halloween pics....

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!!!

Busybody Boy

Saxon has been keeping Mommy and Daddy pretty busy lately.  He's been constantly GO! GO! GO!! But that's OK!! It helps exercise his lungs.  It keeps him healthy.  He's got quite a bit of his dad's spitfire in him too!!!  Nap time is becoming more difficult as he thinks he will miss out on something if he naps.  Yesterday was almost awful in the late afternoon because he REFUSED to slow down.  He could barely stand up!! But that wouldn't slow him down!!

I'm just amazed at how fast Saxon is catching on to things.  His new favorite kids shows are Umizoomi and Mickey Mouse Clubhouse.  He also LOVES watching Monster Jams (monster trucks) when they're on.  Last Thursday when Scot got home, Saxon went and climbed up on his lap with a book.  It was a Dora book about flying kites.  Well, that little stinker was pointing to the pictures telling Daddy exactly what everything was.  He's also starting to count!!  We've been working on just counting to five right now when he's in his vest doing treatments.  When Umizoomi is on and they ask the audience questions - Saxon ANSWERS them!!  When it's time to say Super Shapes or Pattern Power, he says it right with them!!  When they ask if the shapes fit or if something is right, he will nod yes or shake his head no - and he's RIGHT.... he's a smart little whip!!

Here's a few pictures of him watching Umizoomi and doing the "Umi Shake"

It's so funny watching him do that!!  Especially when it's time to "crazy shake" - he usually makes himself dizzy and about falls over!!

He also still has a thing for clothes baskets and Rubbermaid totes.  He will dump the clothes or toys out of them so HE can play in them!

Such a silly little man!!

We have temporarily upped Saxon's vest and nebulizer treatments.  He's been playing outside quite a bit, and he's been sounding kind of snotty and coughing a little.  We pat him on the back to try to get him to cough stuff out, but he can't quite figure out how to get it out.  We think it's allergy-related since he's not showing any other signs of being ill and he's not acting any different.  We're going to keep an eye on it.  If it doesn't clear up by the end of the week, I think I'm going to call Vicki or Dr Ulrich and see about putting him on antibiotics.

Saxon had to go to the doctor today for a one month weigh.  He weighed in at 12.5 kg at his last appointment.  This time he was at 12.9 kg.  I have a call in to Vicki to see if that means we are going in to Mayo in October or if we get to wait until November.  I'm also really hoping Saxon decides he's going to start eating more!!  He's drinking his 3 PediaSures per day, but he's still not eating too much... It's frustrating.  All we can do is keep trying!

Lesson Learned

9:30 pm.  Bedtime?  Nope - it's bath time.  Why, you may ask, am I bathing my little man at 9:30 pm?  Well, we learned a very important lesson tonight.  Saxon cannot have anything to drink before doing treatments either...  We didn't think food would be a good idea, but we didn't think too much of him having about half of a sippy cup of PediaSure before doing his vest and nebby. 

Saxon and Daddy were sitting in Daddy's chair.  He did his nebby and vest... he was getting restless as usual.  Daddy was getting him to sing, and Daddy was singing the ABC's as usual.  Sax got all done with his treatments, came over and gave Mommy a high five, as usual, and went back to sit on Daddy's lap.  And let out a HUGE burp.  Followed by his PediaSure and part of his supper!!  :-(  Poor Daddy - all over his legs and shorts.  All over Sax.  Bath time.

At least he enjoyed his bath!!  And he loves his PediaSure (or P-Sure as he calls it!)

Some of his favorite words right now (with pronunciations!)

• 
  
  Raine (he says Rain-a)
• 
  
  Saxy (sounds like sassy)
• 
  
  Ducky (ducky)
• 
  
  PediaSure (pee sure)
• 
  
  Grandpa (apa)
• 
  
  popcorn (pa cone)
• 
  
  sorry (sa wee)
• 
  
  Abby bite! (clear as day, says abby bite!!)

By the way, Abby only nipped him once - whenever he gets his butt swatted, or pinches his finger, or trips, or anything, he says Abby bite.  If he breaks something, it's Abby broke.  Although, this last time when he broke the wheel off his monster truck, it WAS Saxy broke.  We'll see how long until it's Raine-a broke! lol!!

You're A CF Mom...

You know you're a CF Mom when....

• You judge your kid's nutrition based on what's found in a diaper
• You have permission to "beat" your child multiple times a day
• You conversate with other CF parents and doctors about stool consistancy on a regular basis
• You ENCOURAGE your child to eat salt and fat laden foods
• You ADD extra salt and fat to your child's foods
• You're excited when your child gains weight
• You ENCOURGE your child to gain weight!!!
• When you're grocery shopping, you look for foods with higher calories and fat content
• You teach your child to dip his potato chips in melted butter
• You're not worried when your kid goes into a coughing fit - you encourage him to keep on coughing
• You make chocolate pudding using half & half or heavy cream and whole milk
• You ADD half & half or heavy cream AND Carnation Instant Breakfast to each glass of whole milk
• You get your AC fixed and check to see if you can write it off as a medical expense
• You know the importance of different colors of mucus
• YOU have to explain to the idiots in the ER exactly WHAT CF is to get the proper treatment!!
• You get excited when a medication only costs $100.00
• Your medical equipments costs 5 times the value of all 3 of your vehicles combined!! (Recently got his vest - retail price: $16,500!)
• The cash price of prescriptions for your CFer, for one year, is more than twice your annual salary!! (VERY thankful for insurance!!)  And that's not including anyone else's meds!
• You know the value of tying dirty diapers up in plastic bags EVERY TIME!!
• You get excited every WEEK your CFer is NOT on antibiotics!! (none since the end of March - knock on wood!!)
• Your doctor tells you to buy a stethoscope
• Your doctor has a standing order for antibiotics for your CFer - all you have to do is call and say "I need antibiotics, these are the symptoms" and they're automatically sent
• You have your doctor's cell phone number
• You meet a TON of doctors in specialties you've never heard of
• You feel like a hospital is your second home
• You know all the shortcuts through the hospital
• You can recommend to others what to order and what not to order from the hospital cafeterial
• You plan your vacations based on the location of specialized Centers and travel with an envelope of medical records

Stay tuned for Part 2 of "You're A CF Mom" coming soon!!

Feeling Fallish

The weather is finally cooling down a bit.  It's still summer, but it's cooler, less humid.  Saxon's allergies have tamed down with it, along with his wheezing.  He's been sounding a little bit 'gunky', but I'm pretty sure that is because he's getting shook up so well with the vest.  It is doing SO much more than we could do by hand!!  He's also becoming a lot more tolerant of it - only fighting it about half the time.  But sitting still for 20 minutes for ANY 2 year old is quite the challenge!!  That's not always the case, but more often than not.  We try singing to him and with him to keep him distracted.  We are surge to tell him "Good Job" when he's sitting good.  When we're first setting everything up he tells us "no nebby" but when he's done, he says "Sassy aww done!"  It's so adorable!!

 The cooler weather is such a blessing!  I think the kids are getting restless from being indoors so much this summer.  I try to get them out into the yard to play, but we keep running into 2 major roadblocks: 1) The heat and humidity are hard for Saxon to handle and 2) The mosquitoes have been TERRIBLE this year!!  Even with bug spray on, they find a way to bite.  I was shocked to find bites on the bottoms of my feet!!!  The city spraying doesn't seem to be helping much either.  I think it was better when they sprayed by ground instead of air - it was more effective anyway!!



This morning was a bit of a stressful one on Mommy.  Raine had a dentist appointment at 11.  The kids fought before her appointment.  They fought during her appointment.  They fought after her appointment.  They pretty much fought right up until I put Saxon down for a nap and Raine went upstairs to play with Barbies.  Sax wouldn't stay in the pack and play of course, so he ended up napping on Mommy's lap for a while.



Since the temps were in the 70's and more tolerable today for Sax especially, he and Mommy and Raine walked up to Farmer's Market with our friend Erin. Raine walked pretty good, hardly any complaints.  Saxon didn't make a sound, period, until we were almost home.  That's shocking for him!! When we got home, he played nicely with his sister without fighting until Daddy got home.



Both of the kids had checkups on Monday.  I've been worried about Saxon because he hasn't been eating much lately.  He ate his Maltomeal for breakfast, a spoonful of applesauce for lunch, a little bag of gummies mid-afternoon, and 2 bites of Daddy's pizza for supper.  He HAS been drinking 3 cans of PediaSure per day now, which seems to be helping.  At his appointment at Mayo, he weighed 11.3 kg.  On Monday at his checkup, he weighed 12.5 kg.  We have to go back on the 13th for his next weigh.



We don't have too much else going on.  School has started for Mommy.  School starts in a couple weeks for Raine.  We're trying to plan another family outing or two before long - Mommy is really hoping to take the kids to the apple orchard to pick apples.  Opa and I are going to make homemade applesauce since we go through so much with Saxon's enzymes.  Plus it should be pretty fun!!!  i will keep info posted!!