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 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

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.

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...

x-rays

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."

Dieter F. Uchtdorf

Too Smart

So many people think that because Aaron is so delayed, he's like a baby.  Yeah, not quite.  He's seven, and very much seven.

This week he came up with two new "tricks" that we could have done without. 

Wednesday, he had his annual scoliosis screening.  Yep, it's progressed some more.  40 degrees now.  Other than yet another thing weighing on this mama's heart, it's not a problem, yet.  If he sat independently, they'd start considering him for surgery at about 55 degrees.  Because he doesn't (yet) they won't worry until he's closer to 80 or 85 degrees curvature.  By that point, it will be crushing his heart, lungs and other organs.  I'm just not going there now, I can't. 

But I guess he got bored on the way home.  Shortly before our exit, I hear a metal clunk.  What?  Was that a seatbelt?  I reach behind me and grab it, and guess what!  It's unbuckled.  So I'm wondering, did I just not fasten it well?  How could I do that?  I've got to be more careful.  Weighing my options, pulling over on the freeway and taking our chances that way, or just continuing a few more miles to the exit, I went on. 

At a park and ride, I opened his door, buckled it firmly, and told him, "no funny business."  He grinned.  I should have known then I was in trouble.  About three more miles down the road, I heard the "clunk" again.  He did it again.  Not cool.  I'm impressed, but not thrilled. 

Then today, while I took a nap, Andrew was keeping an eye on him.  He alarmed low sats over and over and over again.  As soon as Andrew walked into the room, he was fine.  So big brother decided to try an experiment.  He walked out of the room, but peeked around the corner.  Sure enough, Aaron reached down, grabbed his pulse/ox cord and started yanking on it until it started alarming.  When Andrew showed up, he dropped it and started playing.  What a kid! 

In other news, school started this week.  Aaron is in 2nd grade.  I can't believe it! 

I found his report from his teacher regarding those eight days he got to go to summer school.  In group work reading, he identified the main idea 100% of the time using pictures. 



He was able to answer who/what/when/where/how questions about 50-60% of the time. 

He's starting a new writing program that he's interested in, but still not quite sure what he's supposed to do. 



He loves school.  He learns at school.  He is not a vegetable, he's an intelligent child who is trapped in a body that makes it hard for him to communicate. 

But hey, he has fun, lots of fun.  For all his limitations, he's not limited in his joy and passion for living.  It seems that no matter where we go, what we're doing, he's excited to participate.  And that makes life better for everyone around him, too. 

"On the whole, the happiest people seem to be those who have no particular cause for being happy except that they are so." 

~William R. Inge

Seeing Clearly

Soooo, we got glasses this week.

I worried that we would have a similar battle with them that we fight with the hearing aid, but figured, maybe not.

Um, nope, not at all.  Oh, he fusses with them a little, pulls them down, or peers over the top, and then laughs when we adjust them.  But mostly, he just wears them and grins.

And even more, it's what we're NOT seeing.

All his life, he's rocked his head back and forth, especially when bored or tired, and especially when upright in his wheelchair.  It's actually a bit irritating to hear the bonk, bonk of his headrest as the post hits against his oxygen tank.  He also hit his head with his fist.  We figured they were just stimming (stimulation) behaviors, you know, just things he did over and over, and were grateful that they weren't more destructive, like gouging out his teeth or other things. But still....

We picked up his glasses on Wednesday morning, and we haven't seen ANY OF THIS!!!

No head rocking, no head banging.

I found a picture that showed the difference between an uncorrected and corrected astigmatism, and yeah, if that's what he was dealing with, I'm so sorry!





But we seem to have fixed it.  He's also sleeping less.  Hm, seeing better, probably not having headaches, less tired...  Yeah, I think it could all add up.

Plus his brothers have nicknamed him "The Professor" because they say he looks so smart.

In other news, we continue to battle the after affects of his cold, but it doesn't seem to slow us down much.  There's just too much to do, too much to see.  Today I even managed to put the bag on and help him breathe during church.  Not sure more than one or two people even noticed. Our new slogan:  Have bag, will travel.  What do you think?

We had a second soccer tournament this week and the annual local SOFT picnic.  The tournament went well and it was so fun to see our friends!  We even met a little girl from Aruba with full T18 who is battling to be given permission by their government insurance to have her heart fixed. 

Yep, it's a reality.  It's not just the kids in the news.  Many children and families fight for care.  It's not even a big surgery, at least as far as cardiac surgeries go.  But that darn "incompatible with life" label gets in the way.  But those eyes, those oh-so-soft curls, the cute noises she makes.   Trust me, she's a treasure.  All our kids are. 






And it's so refreshing to get together with friends who also juggle special needs along side of typical kids and just life! 

Here he is after swiping his brother's (mostly empty) soda can.  He's totally a tease!  Pretending to do what he watched his brother do but only so far.  He'd put it near his mouth, but in?  Nope, no way.  Which is probably good as he wouldn't have known what to do if it had landed in his mouth. 








Yeah, our kids are different from other kids, but they're still kids!  And if you saw them pulling at each other and interacting with everyone, you'd realize that, underneath everything, they're more like other children than not. 

 Those who see the world through the lens of love are true visionaries.

Bryant McGill

No Heart Cath (yet)

At big brother's soccer tournament.

So today was supposed to be that day, the day Aaron went in, they put him under and threaded a small tube up through a blood vessel near his groin into his heart.  It was supposed to be today.  The day I've been worried about for the past month or so.

Except it's not. 

You know those back-to-school colds?  The ones that cause the sniffles and sneezes and coughs just a few days after everyone scurries out the door? 

Sometimes breathing is just HARD!

Well, this kid decided to get his out of the way early.  At least I hope that's what he decided and we don't have another waiting in the wings.

And for Aaron, a cold messes things up.  It messes up his heart, his lungs, his ability to tolerate anesthesia.  If you've ever had surgery, you remember the big form someone goes over with you regarding the dangers of surgery, the risk (teeny) of death, of having something else go wrong, or prolonged issues.  But in reality, it's a non-issue, we sign, we go on, and it's barely a blip on our radar.

Onsies made from Grandpa Bear's old t-shirts.

But with Aaron, in addition to that talk, we also get the "and of course you know, that for Aaron, those risks are exponentially higher."  In our hospital, they have a minimum time you have to be in recovery before going home.  It's something like 90 minutes or so.  When he was younger, we'd hit a timer as he rolled into recovery and were on our way out the door when it went off. 

But lately, it's gotten harder. 

In April, we worked for several hours to get him stable enough to go home after his trach revision.  I thought we were there, we left.  And we came back a couple days later.  Didn't work.  That lovely combination of anesthesia, asthma and pulmonary hypertension. 

Now throw in a cold, junky lungs, runny nose, and well, nope.  We weren't doing it.  Not yet.  Now the goal will be October 19th, during fall break, 'cause we just know how to party.

This last week has been a little intense.  But it's been intense here, at home.  We moved to doing breathing treatments and vest therapy every 4-6 hours.  His pediatrician put him on an antibiotic that's shown some promise in reducing asthma attacks due to rhinovirus.  We've bagged him, repeatedly, sometimes over the course of several hours.  I packed the hospital bag, and when I pulled things I needed out (toothbrush anyone?) I put it right back.  But we stayed HOME!!! 

Seriously, major victory!!! 

I channeled some of my nervous energy into making a few more onesies out of t-shirts my mother-in-law gave him.  I made several days worth of his food to freeze (you know, in case we didn't stay home). 

And then as he started to turn the corner a bit, we ventured out.  He went to all three days of a soccer tournament, although the first day had me bagging him at the field.  Got some strange, worried looks on that one.  Me, I was more worried about the big, dark clouds overhead that ended up clearing the games for an hour. 

Waving at his buddies, the paramedics.

He went to a couple parades, complete with noise cancelling headphones.  He waved at the ambulance, and I told him not to be getting any ideas. 


Yesterday we went to the zoo where he saw elephants, fish, and a giant (fake!) spider.  Yep, I think we got this. 

Tomorrow we've got another soccer tournament, a picnic, and we start the rounds of back-to-school visits.  He starts next week.  It's all good.  It's very good.  And we'll tackle the heart cath and the anxiety that goes with it later.  Enough later that I'm not even going to think about it for a while. 

Life consists not in holding good cards but in playing those you hold well.

Josh Billings