Saturday, September 16, 2017

Our Week

Cheering on my BYU Cougs.  They're really struggling this year,
but that's okay.  I know what it's like to struggle. 
And if you keep trying, sometimes things work out.

Apologies to those who follow the blog but not Aaron's Facebook page.

We actually busted out of the hospital on Monday afternoon and made our way home.  I meant to update the blog sooner, but you know, this whole life thing.

Heading home, almost there, on Monday, my cell phone rang.  I was really looking forward to a shower, and maybe even a nap.  But on the other end was my son.  There had been a mishap on the marching band field, and well, yeah, "I split my head open."  So turn around, pick up the kid and head over to the doctor's office where they glue him back together.

Leaving the hospital on Monday.
And bright and early Tuesday morning I was back at work.  See, substitute teachers don't get paid time off.  Either I work or I don't get paid.  So to back to work I went, all week.  Trying to get caught up on sleep after "sleeping" on a not quite two foot by five and a half foot chair for six nights was also a priority.  And then a nurse became really sick so I pulled the night shift Wednesday night, while also working all week.  Plus soccer games and practices, homework, and yeah, somehow my family still thought that eating might be a priority.  Well, the blog kinda fell by the way side.
Big brother ready to help with my haircut.

Wait, what IS that thing??
All done, and much better.
Aaron had school pictures on Friday (which he made it to, I think only the 2nd time in five years) so he needed a haircut.

In all honesty, I'd been trying to get one done for a couple weeks.  There were even (sorta) concrete plans for one on Labor Day.  But that was a squirrely day for him so I decided we'd better not stress him out, and haircuts definitely do that!

Cute haircut!

But with pictures on Friday, Thursday was the hard deadline.  It was rough for him.  Haircuts are kinda scary.  And he's not usually a fan of the bath afterward either.  But with Andrew's help, he did okay, and he looks so cute!!

 And WE'RE HOME!!! 

And home is a great place to be.

The proper function of man is to live, not to exist.
Jack London

Saturday, September 9, 2017

Saturday in the PICU

Here we are, still waiting, still trying to find that button, that magic switch that will make everything "all better."

Aaron goes for a little while just fine, we start talking about the floor, and then we're back to square one.  We've played this game before, the one where it seems we're stagnating.

But today, a family came into the Ronald McDonald Room at the hospital and made lunch.  Just a family:  Mom, Dad, a few kids.  It wasn't anything fancy.  Bagel sandwiches, a yummy salad, fresh peaches, chips and cookies.  But oh, the difference that made.  To have people willing to give up their time to come help, to bring us together.

See, the room is open from 9 am to 9 pm and anyone can go in and make themselves food.  It's there.  But when a mealtime is set, like they do when someone comes in to help, many of us come at the same time.  And we eat together, talk, help, comfort, laugh together.  And for a few minutes, the world seems a little brighter, a little less cold, a little more hopeful, a little less lonely.

"I love you, and I want you to know you are
amazing and I hope you get well soon."
Their daughter made some pictures that Mom passed out.  Several of us had tears in our eyes.  Again, a small thing, but still, not so small.  A gift.  Aaron's is hanging in the bottom of his bed where he can see it.

It's such a simple thing to do, to make a meal for families in the hospital.  Sometimes people seem embarrassed by our thanks.  But to those of us up here for days, sometimes weeks or months on end, it's a very big thing.

And per his brother's request, he's wearing blue today.  It's the big rivalry game, red vs blue (except Aaron prefers red over blue, we're working on that).

I don't know if we'll watch it all, but we'll probably try to find it.  And I hope, oh, I hope, we're not completely crushed like we have been on other occasions when we've been up here.  It's time for a BYU win!  And Aaron does look like he's getting into it, right?

"Not all of us can do great things.
But we can do small things with great love."
Mother Teresa

Friday, September 8, 2017

Still Hangin' Out

We're still hanging in the good ol' PICU.

They all agree that he's got a pneumonia, but it's starting to look more viral.  There wasn't much at all that grew out of his trach culture and his white blood count was on the high end of normal, so we've stopped the antibiotics.

We tried to make the jump yesterday to his home vent (as opposed to the ICU vent) but that plan got derailed.  There were some challenges in getting some of his heart meds from the pharmacy, plus some nurses and RTs who didn't know him that well made everyone a little nervous about trying that.  And the all powerful question, is he really ready?

Today I pushed and we've done it.  He's back on the type we use at home, although still using a lot of oxygen.  Still, progress, right?

He's happy, he's playing, he's watching movies.  Music therapy came by yesterday and he wanted that guitar.  He was pretty sure it was supposed to stay with him.

Tomorrow's the big rivalry game here in Utah, the "Holy War" between BYU and the U of U.  Yeah, our whole family bleeds BYU blue, except the U is where Aaron gets such awesome care.  Unfortunately, there's been a dearth of BYU victories since Aaron's birth, and we've been stuck up here for most of those games.  Social work to the rescue:  they found a great BYU blanket for him.  Andrew says if we're here, he has to wear blue.  Good thing he had a blue onesie on when he came up, right?

Not sure where exactly things will go from here.  He's tired, which means he uses more oxygen.  (Seriously, kiddo, you're in bed, just go to sleep!)  We just asked RT to come do his therapy and breathing treatments a little early because he's struggling to maintain on 15 liters, but we're not ready to throw in the towel yet.  Fifteen is as high as the home vent can sustain.  With the treatment, he's doing a bit better, but I doubt the floor will be happy to see us at this point.  

So he's on a bubble, and we're praying that when it pops, it finds us either going upstairs, or maybe even down and out the door.  Really hoping it's not a cha-cha:  a step forward, a step back and a few to the side.

Sometimes, real superheroes live in the hearts of small children fighting big battles.

Wednesday, September 6, 2017

Pneumonia, Sigh...

Monday afternoon.  I admit, I chose his shirt
because the caption echoed my feelings.
Sooo, here we are again.  That cold we had a few weeks ago seemed to go away, although he never did quite make it back to his baseline.  He was close, but I was still feeling really good about having put off that heart cath.

Except Sunday afternoon, he started struggling again.  It wasn't super bad.  Just a bit junkier, more runny nose, and more oxygen.  But all his secretions were clear, super clear.  Like usually when we suction his trach we get cloudy white fluff, but even that was a lot more like water.  Still...

Then Monday was a bit more.  In fact, at one point Monday evening, I hollered for William to come bag him 'cause I was putting on real clothes (as opposed to the ratty stuff I'd been wearing all day) and calling an ambulance.  But then before I was even dressed, William had bagged him up to 100%, and he actually stayed  up where he belonged for several hours.  So we put that plan aside.
Not terribly different than his
usual, but there's some
definite clumps of patchiness.
Yep, that's the bad stuff.
(How's that for medical speak?)

He slept well Monday night and was ready and raring to go Tuesday morning when it came time for school.  I did hold off on accepting an assignment just in case...  Well, there were a couple people in his classroom who weren't feeling great, so I went over to get him early in the afternoon.  He decided that maybe HE wasn't feeling awesome when we got home.  We ended up maxing out on his oxygen and his albuterol, and still not making headway.

Feeling quite pleased with himself for
engineering all this.
Yep, that earned him a ride in the golden (okay, red) chariot (ambulance) up to his favorite vacation home.  I'm serious.  He started laughing when we pulled into the ambulance bay at Primary's.  Goofy kid.

Anyway, x-rays and labs seem to show a pneumonia, and he's gotten worse since we got here.  Last night was kinda rough.  He found himself a spot in the PICU on a ventilator that can deliver up to 100% oxygen.  They've got some high-powered IV antibiotics going.  And he's flirting with the nurses and making new friends with staff who haven't met him before.  I'll tell you, this kid...

At least he's happy, right?  He's always happy.  Man, we could all take lessons from him.

"Happiness is the destination, but it’s also the path."