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!!!

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