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.

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!!

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