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, 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....

No comments:

Post a Comment