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.

Wednesday, May 22, 2013

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!!!

Saturday, May 11, 2013

Tune Up 1 Day 3


This little boy really needs an off switch or button!!!  He is bouncing off the walls today!!  That must mean he's feeling better.  But I've had to threaten him with time-outs and taking away toys because he's taking things a little too far.  He started to do the gator death roll while getting his antibiotics.  That can cause his PICC line to come out if he pulls too hard on it, which would mean another surgery to put it back in.  We've tried explaining that, but he's just not hearing us.  

I know it's a little taxing to spend so much time in the room, but he hasn't been confined.  We've been going down to the play room, but we've also explained that he has to do his treatments and medications or he will be here longer.  Sax has also been chewing on his feet and sucking on his toes which, of course, is not a good thing either.  Hopefully when he gets to go outside in a few days he can run off his pent up energy.  I don't think it helps that, as much as I tried, I couldn't get Sax to take a nap.

I slept by Saxon for a little bit last night, but I just couldn't stay comfortable, so I went back to the window seat.  I'm glad I did, because the night nurse said his nose had been bleeding during the night.  She cleaned up his face pretty well but it was still on his pillow and blankets.  After some breakfast, nasal spray, and morning meds and treatments, we figured a bath would be the best way to get him really cleaned up.

Have you ever tried to bathe a 4 year old with a PICC line in?  Especially one as energetic as my son?  Let me tell you, it was a very trying experience.  His day nurse wrapped his PICC area in plastic wrap and then wrapped the rest in a stretchy rubbery tape.  

Showing off his arm wrap and a fishy toy behind his back
She told us not to get it wet because he'd have to have it redone.  I only put a couple of inches of water in the tub, but still had to cut his bath short.  He just couldn't understand he shouldn't get it wet.  He would ask me if he could put his arm in the water, I'd say no, and he'd try doing it anyway.  It was hard enough trying to get his hair washed without getting the bandages wet. On the plus side, they gave us baby shampoo to use, so he smelled like baby soap and baby lotion when we snuggled afterward.  

This is his right arm - these spots are where they had originally tried putting in his PICC line.

Being silly after his bath.
Since he had still been pretty good at that point, I agreed to go to the playroom for a while.  I told him he could play until about noon because we had to go back, order, and eat before it was time for his afternoon thumpies and antibiotics.  I was surprised when he didn't go straight to the computer and opted for a tote of cars and Monster trucks instead.  He found a couple different tracks to drive them on and was quite content while I sat back and watched. 

The weekend worker from Child Life came in to visit since we were the only ones in the playroom.  Sax was interested in playing some board games, but we couldn't find any.  All the cabinets have locks so we hadn't even looked in any of them.  She pointed out the board game cabinet and told us it is never locked and we're welcome to take a game or a few back to the room with us if we'd like.  When I asked about weekend activities, she said there would be one around 2.  Unfortunately that is when he is scheduled for his meds.  If we didn't make it back down there, she was going to bring the activity to us.  Sounded like a good plan to me!!!

Dr Pianosi came to see us while we were still in the playroom too.  We lucked out that it is his weekend to work.  He repeated that Saxon's lungs looked really good on the bronchoscopy and asked if he'd been coughing.  He seemed happy to hear that he has been quite a bit.  As of right now, Sax's lung cultures are still only showing h. influenza, which is normal for him, along with a large amount of white blood cells.  Sax's nasal cultures have started growing staph.  I was just trying to absorb all the information, so I didn't ask him to elaborate on that.  We'll see him again tomorrow so I'll be able to get more information about it.  Dr P did order a change of antibiotics to treat the staph for now.

When we got back to Sax's room, we played a couple games of Candy Land after ordering lunch.  It took over an hour for our lunch trays to come and they forgot some of the order, so that was a bit of an ordeal.  Fortunately it's the only time it's happened and normally it doesn't take long for most meals to come.

Contemplating where the picture is so he can jump ahead

Loving the game!!

Can you guess who's winning?
After beating me twice in Candy Land, Sax threw a fit - and a few game pieces - because I drew a picture card and was close to winning.  That was the end of playing that game!

Our lunch didn't show up until almost 1:30.  By the time I got Sax's food cut, salted, and buttered, the nurse was already coming in to do his meds.  Shortly after that, the RT showed up.  Sax decided it was a good reason for him not to eat then.  That was disappointing because he'd had such a good appetite the day before.  He also had to have the cap changed on his PICC line.  He didn't like having to wear a mask for it, but to make things easier, Buppy wore one too.

I suggested we nap for a bit since Daddy was coming to visit today.  I told Sax that he would have a lot more energy if he got his nap out of the way, then he could play with Daddy a whole lot more.  Child Life came in while I was trying to get him down.  The volunteer that was supposed to come today didn't show up, so they didn't have a formal activity.  Instead, she brought the planned activity to Sax's room for him to do - a ceramic elephant piggy bank to paint!  That made him happy!!  I still insisted he had to lay down for a bit longer and try to nap before he would get to paint.  After another hour, I gave up and let him work on his project.

He got his own brand new set of paints with the piggy bank

Trying to decide on the next color

The artist hard at work - I love this picture of him!!!!

His finished bank

We played Go Fish until it was time for supper.  

Mommy told him Go Fish!

That didn't cause too many problems because I only won one game, and all the rest we either tied or he won.

Daddy got here after supper and made a certain little boy very happy with the gifts he brought - especially the balloons!

He also got cards from Grammy and Raine, along with a few presents, which he loved.  It was difficult getting him to leave all of his stuff in his room so he could take Daddy to the playroom.  But he forgot about that once he had the chance to show Daddy the trains, aquarium, and Monster trucks.
Which one is the little boy???
All of a sudden Sax grabbed his pants and said he had to use the bathroom.  When he realized there wasn't a bathroom in the playroom and we would have to go back to his room, he changed his mind.  I insisted we go back because I really wasn't in the mood for cleaning up any accidents.  And that is when the tantrum began.  Besides the yelling, which is pretty typical for him, he kicked off both shoes, then kicked them out into the hallway.  I picked him up and started back to the room, and he yelled and cried the whole way.  His punishment?  No more play room for the day if he's going to act like that!!!

At least we had a nice view to accompany his 'musical' talents!

I love sunsets

He finally settled down for his treatments when Daddy laid down with him in the hospital bed.

Like father, like son....

Since Daddy is here, I made a quick trip over to the NICU since it's night time.  I wanted to see if our favorite NICU nurse was working.  I was just going to leave a note letting her know that Sax was here and, if she had a chance to stop over, we'd like to see her.  The receptionist said she was working and brought her out.  She came over to Sax's room and visited with us for a little while.  The kids loved her too, and she was so great with Baden.  We still get cards from her and have sent a couple of our own to her via the hospital.   She said she still thinks about our Little Warrior quite often - that little man who touches so many lives.....  She's going to try to make it back later this week to visit again.  I told her we'll be here all week!

Now, at 10:50 pm, Sax is watching 101 Dalmatians for the 10th or 11th time today... still not asleep....  I'm hoping he crashes soon because he is definitely overtired!!

Friday, May 10, 2013

Tune Up 1 Day 1 and 2

WARNING: This post is kinda long somewhat graphic in spots.

I know I promised to update yesterday as things progressed, but honestly, I was 10 kinds of worried and completely exhausted.  I had been up until 11 pm on Wednesday packing and getting things ready for our stay here.  Then I was up at 3:30 am on Thursday to help get the van loaded and be at Mayo by 6:15 am to report for Saxon's 7:45 am surgery.  We got through the drive here without incident, and no complaints of starving from the little man (although I was starving by the time we got to eat breakfast!)  Sax insisted we wait in the family waiting room because he wanted to play on the computer.  

Normally I'd say no because it's full of snotty kids coughing, but since we were the first ones there, that wasn't a worry.  As a matter of fact, he was called back before we even saw any other kids come in!

I love how the OR has a screen that shows the progress of the procedures.  Each patient is assigned a number at check-in, then their number appears on the screen.  It tells if the patient is waiting to go to the OR, is in surgery, when the procedure is done, and when they are in Recovery.  

We took him back to the pre-op room and helped him change.  I was surprised when the doctors told us that he was going to have a PICC line put in.  At first we were both against it after what had happened with Baden.  After the specialist came and explained it in more detail and the benefits of having it, we consented, although we were both near tears.  Then another doctor came in and told us they decided they weren't going to do the PICC line because there wasn't a team scheduled to put it in....  In the end, they did end up doing it.  (Today when the PICC specialist came in, I heard her and the nurse talking, and one said the line is a "peripheral line" and not a central line, which is what Baden's line was.  Apparently that makes a difference when it comes to administering some of the antibiotics.)

Posing before going in to surgery
 Scrappy went in to his procedure at 8:14 am.  Daddy wore the "bunny suit" and took him in.  He stayed with him until he was asleep, then the two of us went back to the waiting room.  Since we had fasted right along with him, we checked out and headed to the visitor's cafeteria for some breakfast.

We hadn't been gone long, but when we got back, one of the doctors was already looking for us.  I was worried until Scot pointed out that they had both of our cell phone numbers and would have called us if it was anything serious.

A few minutes later, Dr Boesch, the pulmonologist from his surgery, came to talk to use.  He said that he had completed the bronchoscopy and lavage, but there wasn't much in there - which is a good thing!  He said there was a small concentration in his lower left lobe and his upper right lobe, but overall things looked good.  They cultured the lung samples separate from his sinus samples.

Another bit of time passed before we heard anything more.  Next was the anesthetist to tell us about the PICC line and get our verbal consent.  He said the PICC line was going to be put in after ENT was done with the polypectomy.  He assured us that there was a lot less risk taking this route with Saxon than leaving in an IV.  For the surgeries, he did have an IV already in, but leaving it in can lead to several problems.  It can cause scarring of the veins, it can blow a vein, or it can more easily become infected.  In the last 2 cases, the IV would have to be replaced, in which case any of those 3 things can happen again, and the cycle would continue.  The PICC line is less likely to cause those problems.

Again, I told them the best bet would be to put the PICC line in his right arm, as I had told them with the IV, because we didn't want it to interfere with his thumb.  His left is the only one he sucks, and when he's tired or not feeling well, you do not want to mess with that thumb!!  From what I can see, they must have attempted to insert it in his right arm, but for some reason it didn't work.  He has a band-aid on his upper arm, and the line is inserted in his left upper arm.  It doesn't seem to be causing any issues so far... thankfully.

They said the seepage is normal.  They cleaned it up today and rebandaged it, plus wrapped it in gauze to keep the line from hanging down.  It looked a LOT worse than in this picture today.
Finally Dr Cofer came out to give us the report on his sinus surgery.  She said there was very little to see in his actual nose, but the left sinus was full of polypoid tissues.  There was a lot to clean out in there, but in the past his actual sinuses were too small to get into.  They are going to culture everything extracted from his sinuses to see what grows.  This will be kept separate from the lung cultures.  She said he was "doing fine" and that we'd be able to see him soon because the PICC team was working on inserting the line.

He ended up being in surgery a total of 3 1/2 hours - his longest surgery yet.  But he did have a lot of work done, and it's better to only put him under once instead of repeatedly.  When we got to the recovery room, he was still pretty out of it.  He came to enough to pull off the bandage they had put under his nose to catch the bleeding, so his face was pretty smeared.  After a bit, he rolled his eyes up at me and asked for a drink.  The nurses brought him a freeze pop, which worked pretty well.  I fed him as he dozed in and out.  He asked for a second one when he was done, but we decided to wait until we got him up to his room because we didn't want him to have too much too fast.

He dozed for a while when we got to his room.
Buppy and Saxon snoozing.  Buppy is wearing Sax's scrub cap.

When he woke up, he got another popsicle as he was coming around more.  He was not a happy camper at first.  When RT came in to do his first nebby and vest, he freaked out because they brought the mask to use.  We think he was having memories of the anesthesia mask because he said he could smell cherries, which the anesthesia mask was scented like.  He fought so much he caused his nose to bleed again.  

I finally got him to calm down when his lunch tray arrived, and I fed him all throughout his treatment.  We couldn't believe how much he ate!!!  A bowl of brown rice with butter, 5 Twizzlers,  a package of gummy treats, a cup of chicken broth, a cup of rainbow sherbet, and some lemonade.  He asked me to get him some French fries, applesauce, and 2 more sherbet, so I obliged when we were done.  He was asleep by the time it came, but when he got up he did eat both of the sherbets!  The fries were cold, so he wasn't too interested in those.  Can't really say I blame him.

We were getting a little worried when, by 6 pm, he still hadn't peed.  He had fallen asleep at that point, and the doctors had said if he didn't go by 7, they were going to put him back on IV fluids until he did go.  With a little bit of coaxing from me and the nurse, we were able to get him to go when he woke up a little after 7.  But now today he's only gone twice.  With all the fluids he's taking in, he should be going more.  I'm not sure what their plan is about that now.  

The doctors are also a little worried that he has not had a bowel movement yesterday or today either.  I told them that he needs the Miralax and Colace daily to keep him going, otherwise he backs up and we run into more problems.  They are discussing the next step and keeping an eye on him.  I don't think there is a blockage at all because he has been passing gas quite frequently.  He claims he isn't, but I can definitely smell it :( 

There were some volunteers here at the hospital yesterday shortly after we got to the room and were getting Sax settled in.  They had a large tray full of stuffed animals - puppies, elephants, pigs, among others, and told him he could pick out whatever one he wanted.  Of course, he went for a big, fluffy, soft puppy.

Sax named him Muddy Buddy.  Not quite sure why since he's tan, but it's his pup and he can name it whatever makes him happy.

He slept pretty well most of the night last night.  The nurse was coming in to check on him and get his vitals, along with his antibiotics.  At 3 am he woke me up and said he was scare, could I please sleep with him?  How could I say no to that sweet little man?  Of course it wasn't very comfortable, so about an hour or so later I went back to the bench below the window to sleep.

6 am, bright and early, I wake to "Mommy, it's time to get up!"  He was in great spirits, his nose hadn't bled or leaked during the night, and he was ready to GO!  The whole day has been a challenge to try to keep him mellow enough that he doesn't cause his nose to bleed again - which it's done a couple of times.  We've had a lot of doctors and nurses coming through with a lot of information.

Here's the basic run-down (so far):

  • Surgery went well - the basic problem seems to have come from his sinuses - he has probably been having sinus headaches.
  • His cultures started growing h. influenza right away, which he's always cultured.
  • He is NOT on droplet isolation for the first time ever!!! 
  • He is still scheduled to stay 10 days at this point, but could still possibly culture other "stuff"
  • His treatment plan has been decided as
    • CPT 3x daily
    • Nasal saline spray 4x daily
    • IV antibiotics every 6 hours
After a few days, he should be able to go out to the courtyard to get some fresh air.  We just need to wait for his nose to heal.

A few pictures from today's activities:

Playing with playdough

Checking out the fishies in the playroom

They even have a Lego and train table!!

Making a craft at craftime for Mommy

His finished craft for Mommy

Doing thumpies and nebs (you can kind see his nose is crusty from the bleeding)

The view from Sax's room
Well, the little man is sleeping now, and I think maybe Mommy should take a nap too while I can!!  He's definitely going to keep wearing me out!

Sunday, May 5, 2013

Great Strides 2013 - and Tune-Up Info

Yesterday was our Great Strides walk.  I am happy to report that our team raised over $700!!  We didn't have as big of a team as last year, in part because of the weather, but we still had 11 walkers:

Me, Scot, Raine, and Saxon
Steph Terry and her girls Marissa and Ana
Sam Wasmund
Steph Putzier and her son Gavin
Jason Becker

It was Jason's first year walking - it's always nice to add a new person to the group.  We survived the snow along the way, even though it was a little difficult to get through in a few spots with the strollers.  There weren't very many walkers overall.  We usually have to park several blocks away, but this year we parked in the lot right by the park.  We were outside with the kids during the program, so we must have missed the announcement of not going to the 2nd checkpoint.  We got that far and didn't see anyone else there with refreshments, which they normally have.  We also didn't see anyone coming up behind us.  But we got twice the walk in.  One guy from another team decided to go all the way to Soldiers Field, but that would have been too difficult through the snow with the strollers. (I also noticed the date is wrong on my camera!)

Scot, Saxon, and Sax's CF nurse Vicki

Supposed 2 be checkpoint #2

As for Sax's upcoming appointment, our plan is that Sax is getting admitted on Thursday after his surgery.  His tune-up will consist of IV antibiotic cocktail and CPT 4x daily.  He is expected to be in the hospital until May 19th.  It could be a few days more or a few days less, depending on what his cultures grow.  I will try updating here daily while we are in....