This is Saxon, our energetic little man who was diagnosed with Cystic Fibrosis when he was a week old. We gathered together many friends and family members and created Strides for Sax. Our mission is to raise money and create awareness for the Cystic Fibrosis Foundation to find a cure for cf. This is all about Sax and our team's efforts for the cause. As of the creation of this blog, Saxon is 21 months old, has been hospitalized several times for pneumonia, and had undergone 3 surgeries since his first birthday.

Thursday, January 26, 2012

You're a CF Mom (part 2!)

Here's part 2 of the CF Mom series - lol!!

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

You can talk about the smell, color and consistency of poop while you're eating and not think twice about it

You can make recommendations from experience that can greatly improve others' first hospital stays

When you go on a trip, you have to have a separate bag for all of your CFer's meds, and it's about the size of your CFer's suitcase

You feel sorry for the lab people at the clinic - they don't know what they're in for when they open that stool sample!!!

You kind of fear potty training because you KNOW how awful those poopy training pants are going to be to deal with!!!

You babysit another little one, and you start looking for their enzymes and meds at feeding time

You forget what it's like NOT being a CF mom!

You try giving the receptionist at the doctor's office your CFer's info instead of yours because it's just a habit.

You have more doctors' phone number programmed in your cell phone than you have family members.

You can drive the 1 hour drive to see your CF team with your eyes closed.

You don't know your child's weight in pounds, just kilograms, since that's how the clinic weighs him.

You get really excited when your CFer decides to eat a stick of butter like a banana :)

You don't know the everyday, common names of a lot of medications since your child has been on so many generic variations that the technical name is easier to remember.

You 'sniff' strangers the first time you meet them to determine if they smoke or not.

At doctor appointments, your CFer's doc hands you a list of meds for you to look over because reading off the list takes too long and too many are difficult to pronounce.

You're excited when your CF is only on 5 medications.

You send your CFer to someone else's home with a 'care sheet' so they know when/how to administer meds, even if they're only there a few hours.

You have your CFer's clinic number memorized.

When people ask how your CFer is, you ramble on using medical terminology about throat cultures and medications and forget the other person's life doesn't revolve around hospitals/clinics.

You have extensive experience fighting with insurance companies - and generally end up winning.

You become a respiratory illness expert.

Wednesday, January 25, 2012

The Results Are In....

Vicki called us with Sax's polyp and lavage culture results.  We were hoping he wouldn't culture much, if anything, but we weren't that lucky.

They found a tiny bit of strep, which they aren't worried about, but he cultured staph again along with haemophilus influenzae.  It seems like he cultures this more often than not when he has this throat cultures.  Dr P decided to do a course of 2 weeks on amoxicillan 3x per day, and gave us a refill also.  Sax is scheduled for a followup with Dr Cofer on Feb 3.  We are supposed to ask her if we will need to go a 3rd week on the amoxicillan.  Sax's eye has been gooping up a bit, but Vicki figured the same as I did - it's from his sinuses being clogged as they're healing, and the antibiotics should clear it up. 

Sax seems to be feeling more like his old self.  He was a little feverish the other day, but now seems to be better.  We've discovered just how much he needs his naps though.  It's hard to handle his tantrums on days he hasn't napped. :(

Monday, January 23, 2012

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:
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 :)

Thursday, January 19, 2012

Asking for a Prayer

Everything went well with Saxon's surgery yesterday, but since it was so late he ended up being inpatient.  We're still at the hospital, I'll update about the surgery and his new meds when we get home, but I'm asking for prayers for Sax.  A bladder scan shows that, even though he hasn't peed yet, that his bladder is full.  He had a barely damp pull up last night and, in spite of IV fluids, still hasn't gone today.  He also hasn't eaten and has barely drank anything.  He won't be allowed to go home until he eats, drinks, and pees.  Please keep him in your prayers.  We'll all anxious to go home - no one moreso than Sax..

Wednesday, January 18, 2012

Ready To Go

We're sitting in the waiting room right now waiting to for Sax to get called back for what is going to be his 4th surgery in less than 3 years.  He is having a nasal polypectomy, bronchial lavage, bronchoscopy, and having tubes put in his ears.

I was really irritated when we called for his report time last night.  Normally he has to be at the hospital around 6 or 7 am when he has his procedures, especially since he has to fast.  Well, we didn't get that lucky this time :(  His report time was 12:30 pm!!  How do you tell your 3 1/2 year old child that he can't have anything to eat or drink?  I think it's just cruelty!  So, being the 'good mommy' that I am, I kept Sax up as late as I possibly could and sent Daddy to bed (ONE of us needed to get some sleep...)  I got him in his jammies, gave him some loaded PediaSure (DuoCal plus Carnation Instant Breakfast chocolate), got him a few snacks, and turned on the Wii.  He and I played Monster Jams until about 2am!  I figured, if he couldn't have anything to eat after 4am, I'd just let him snack all night.  Letting him play on the Wii ensured he stayed up a lot later, too.  I reasoned that the later he stayed up, the later he would sleep in the morning.

And it worked.

I got out of bed a little after 9 this morning (courtesy of my two fur babies) and went downstairs to find Sax sound asleep on the couch.  He had gotten up a little earlier, but after Daddy walked with him for a few minutes and then turned on cartoon, he crashed.  He slept until I got him ready to go about 1030.  The whole ride to St Mary's, he was pretty quiet too.  Sax just looked out the windows and pointed out all the semis he saw.

He just asked for a PediaSure when we were getting his vitals taken.  I promised him that after he 'does a nebby' for the doctors, I'll give him some M&M's and a chocolate PediaSure.  We brought Buppy with us today too.  Buppy is going with Sax for his procedure and even has his own wristband (around his neck since it wouldn't fit his paw).  I'll post a pic of him after we get home...

We have about an hour wait still.... So he won't go in until around 130.  The procedure is supposed to take 1 hour 45 minutes.  His last one was supposed to be 1 hour 30 minutes, but took 3 hours... so we'll see what happens.  They said if we don't hear anything after 2 hours to ask at the desk.

Sax and Daddy are playing monster trucks to kill time and to keep Sax distracted.

I'll post after we know more.  Just keep him in your prayers for now....

Saturday, January 14, 2012

Always Playing Catch Up...

So it's been a while since I have updated this.  Sometimes life gets in the way.  Sometimes there's just nothing to say.  Sometimes it's just too hard to say what you really want to say.  I don't know.

It's been a rough few months.  Sax became a big brother on November 12, 2011, then we lost our Little Warrior on November 20, 2011.  It was a very difficult time for all of us, even though Sax doesn't completely understand all that happened.  You can read about Baden and his life and struggles at  Sax tells us often that his brother is an angel and has wings in heaven.  He also tells me often that he misses him.

Saxon really hasn't had too much happen (other than a couple minor colds) to write about until now.  Christmas was nice and quiet, thankfully, and we got to spend it with our family.  Here's a nice group pic :)

We spent 2 days this past week at Mayo.  On Tuesday he had a full day of appointments, plus Mama had a morning checkup (which went great!)  Sax's first appointment was at 7am for a fasting blood test.  Raine stayed at Aunt Abbey's so that she wouldn't have to get up so early to be dropped off.  I was up at 330 and couldn't get back to sleep.  We had to leave about 5am anyway.  Daddy and I couldn't have anything to eat either because it wasn't fair to Sax.

I have a problem with needles, so Scot went in with him for his blood draw.  He is such a trooper!!  When they stuck him with the needle, he said "Ouch."  After a minute or so, Sax said, "I wanna be done."  Then when they took the needle out, he said "ouch" again, then asked if he could have some stickers now.  That was it.  No tears, no fighting or fussing.  (Must get that from Daddy - hahaha).

Daddy took him to the next appointment - for his chest x-rays - without me since I was at my appointment.  Sax didn't want to put the hospital shirt on, but sat just fine all by himself and posed for his x-rays.  He's NEVER been as cooperative as he was Tuesday!!  Such a BIG BOY!!! (Although it is sad that he is so used to the procedures that he knows what to expect....)  I also didn't make it back from his audiogram, but apparently that was better than it had been in December.  (He had an ENT-only appointment in November, where he practically failed his hearing test and we found there was fluid behind his ear drums again.)  Sax knew what he had to do and was having fun flinging frogs, trains, bugs, and other miscellaneous items around the room when he heard the beep (yes, he was supposed to be flinging them.) 

I met up with "the boys" right before the appointment with Dr Cofer, his ENT.  Her assistant checked him out, then she checked him out.  There is still fluid behind his ear drums.  His sinuses under his eyes are swollen and it looks like he has bags under them.  There are also a few polyps in his nose again in spite of using Nasonex.  She is going to put another set of tubes in his ears and remove the polyps.  She ordered a head CT to check out his sinuses and see if there are any deeper polyps and to see if his sinuses are opening up.  We warned her that Sax does NOT like the CT machine, so she also ordered sedation for him.  The CT was scheduled for Wednesday and surgery scheduled for Wednesday, January 18th.

The last 2 appointments for the day were with the CF team - Vicki and Dr P.  Vicki did the usual checkup except for the throat culture.  When Sax has his surgery next week, Vicki and Dr P have requested a bronchial lavage, so they will do the culture then.  We watched Cars 2 while waiting for Dr P.  Sax fell asleep and stayed asleep through the entire appointment.  He listened to Sax's lungs and looked over the x-rays.  His upper lungs have cleared up quite a bit.  The deposit that Dr Henry has pointed out didn't seem to be showing up any more either. 

We really think switching the Pulmozyme back to morning may be helping :)  I've also been using the Wii Fit to bribe Sax to do his morning treatments - after thumpies and nebbies, he 'gets to' run after a puppy.  He has fun and exercises his lungs a little more!

We were also very happy to find out that his weight has increased - he's up to 15 kg!!  That's the highest he's ever been!!!

Wednesday we went in for Sax's CT - and that was a mess.  We were told he needed to fast because of the sedation.  His appointment was at 8 am.  About 9 am the technician finally came to get us.  They weren't planning on sedating him and just wanted to strap him to the table.  We knew it wouldn't work, but just to show them, I tried laying Sax on the table.  He freaked out!  It was like trying to hold down a wild animal!!  I told the tech - again - that he was supposed to get sedation! 

I don't understand why they weren't ready - it was noted on the appointment sheet we got.

We were sent back to the waiting room.  A few minutes later a nurse came in to tell us they were waiting for the anesthesia team.  Because of Sax's CF, he can't have the regular sedation.  The CT team apparently didn't know this, even though it was in Sax's orders - grrrr!!!!  We were moved to a private waiting room until 1015 when they were FINALLY ready.  By this time, Sax was extremely upset because he was hungry and thirsty.  I don't blame him!  He hadn't had anything to eat since 7pm!

I feel bad about lying to Sax to get him to take the anesthesia, but it had to be done.  We were back in the room with the CT machine, and he was getting scared again.  I told Sax that we were going to do a nebby treatment so he wouldn't be afraid to put on the mask.  This did the trick - within a couple minutes he was sound asleep.  He needed an IV as a precaution with the anesthesia.  Then it was another hour at the hospital while he was coming out of it.  He wasn't completely up to par until later in the afternoon. Sax was suffering from motion sickness on the patient shuttle when we went to pre-register for his surgery, and then in the van.  Since his stomach was empty he was just vomiting up mucus and stomach acid.  I felt so awful for him.  Around 3 we finally got him to drink a little water and eat a few crackers.  Later in the afternoon/early evening, his appetite picked up and he ate some more food.

I'm sure I won't have a chance to write again until after his surgery, so it will be Wednesday night or Thursday, depending.  The surgery is planned to be outpatient, but it depends on how deep into his sinuses Dr Cofer has to go.  We were told to pack a bag just in case....