Thursday, October 19, 2017

And Now We Wait.

Aaron is in the cath lab now.  We weren't going to come up early, but after talking it over, the wiser course was to come last night.

We needed to stop his heart meds before the procedure and there's one in particular that he's really sensitive to.  Much better to be in the hospital already than to try to bring him in without it.

I know I've said before that he gets giddy when we come up.  Here's more proof. Silly boy.

Anyway, ideally, we will go home later tonight.  Realistically?  Well, we'll see...  Meanwhile, we wait.

Our willingness to wait reveals the value we place
on what we're waiting for.
Charles Stanley

Saturday, October 14, 2017

Heart Cath, Flu Shots, Wave of Light, So Many Thoughts...

What's on my mind? 

So much, just soooo much.

It kinda seems to run in circles. 

There's the whole "flu shot debate."  Except in this house, it's not a debate.  It's a "get it or we'll see ya in May".  I know, I've heard it all.  Believe me, and I've listened.  But somewhere, somehow, you have to decide who to listen to.  I've chosen to listen to those who have spent time studying the human body and how it works, over many, many years, and what causes problems for it.  I've chosen to look at history.  (Flu pandemic of 1918 estimated to have infected 500 million, 1/3 of the population world wide, and killed 20-50 million.)  And I've chosen to watch how flu has affected the healthy members of our family, and how "just as cold" has affected Aaron.

Snug as a bug in a rug at marching band.
Last year, I got the shot, and I got the flu, too.  Yeah, I felt awful!  But I didn't get the fever and a lot of the body aches that went with it, probably because of the vaccine.  I'm a pretty health individual, but I still ended up with a pneumonia from it, probably because I wasn't able to slow down and rest like I needed to.  Between the two, it was literally 3 1/2 months before I was back to where I felt good:  the beginning of February through mid-May.  I can't imagine how it would have been if I hadn't had some protection.  And the only reason Aaron didn't get it was because I avoided him all I could, and when I couldn't, I looked like something out of a hazmat situation.  You know, gloves, mask, robe, etc.  And lots and lots and lots of hand washing and sanitizer.

Then there was Aaron a few years ago.  We ended up in a Lifeflight and sicker than I've ever seen him, EVER.  And he had a cold.   Yeah, rhinovirus. 

There's a lot of information about cold vs flu, but this year I found some articles (yeah, I'm a medical junkie) about the WHY they're different.  Basically, what it boils down to is the areas they are comfortable in and attack. 

God is an incredible artist.
Most colds need lower temperatures to survive and replicate.  No, not lower like cold weather.  Lower like more towards the outer part of your body, the nose, throat.  The upper airway.  That's why they're referred to as URIs, Upper Respiratory Infections.  It's not fun, in fact, it's downright miserable.  But the viruses don't do so well at the higher temps found in your core.  You know, where your lungs are.

The flu on the other hand, binds to lower receptors, the ones found down in your lungs.  And often, it finds those by the alveoli and causes trouble there.  The alveoli are where the oxygen exchange takes place.  Unhappy alveoli leads to lack of oxygen transfer.  See the problem? 

And this year is forecast to be an especially bad year.  Sigh...

Then there's the heart cath we have coming up this week.  On Thursday.  Not that I'd forgotten, in fact at any point in the last couple weeks I could tell you exactly how many days, but a stark reminder came when I heard from the cardiology nurse asking if I thought we should be admitted the night before, or just wanted to come in the day of.  That in and of itself is telling.  Only with the most critical patients, the most complex, do they offer to admit beforehand.  In fact, this was a first for us even. 

No, I think we'll wait until morning.  You know, one more good night's sleep in my own bed.  And besides, it's more of the during and after that has my anxiety ramped up.  This is the same cath that we were supposed to do in August.  It's the one where it's possible that his pressures might have been reduced, giving us the outside chance of maybe someday repairing his heart.  Given recent (and not so recent) history, I'm going to be happy if it hasn't gotten worse.  But I guess we'll find out. 

Then there's the whole part where he hasn't done as well following anesthesia for the past couple years.  And the "lovely" weather and all the smoke haze.  And, and, and... 

Yep, not sleeping so well right now. 

But I'm not going to give in.  I'm going to put on my big girl panties and be grateful for what we do have.  We have a child whose smile lights up the world!  And he is still here, with us, more than seven years after his birth.  We have other kids who are doing amazing things to help those around themselves, who are compassionate and hard working.  We have a home and some wonderful nurses who care for and love Aaron, almost as much as we do.  And we have a family that has been tied together with eternal bonds. 

Sunday marks Infant and Pregnancy Loss Day and the Wave of Light.  This is where people across the world light candles from 7-8 pm, wherever they are, to allow a wave of light across the globe to remember the little ones who've gone on before us.  You would be surprised if you knew how many have survived this.  It may be your sister, your mom or grandma, your neighbor, your coworker, your teacher.  Infant loss is still a taboo subject in our culture, but it doesn't have to be.  Reach out, love someone, show them you care.  You can even participate in a digital wave by taking a picture of your candle between 7 and 8 your time and posting it on Twitter or Facebook and using the hashtag #WaveOfLight. 

Like I said, there's a lot on my mind.  In fact, there's a lot more, too.  Children (older than infants) who have passed recently, people I come into contact with that don't think they can ever "be enough", etc, but I won't go into that now, maybe another time.  I think I've rambled enough here.  Just remember, you are important, you are special, and so is everyone around you. 

 “How cool is it that the same God that created mountains and oceans and galaxies looked at you and thought the world needed one of you too.”
-Author Unknown

Sunday, October 1, 2017

Crazy Thing We Call Life

Working on sitting up, all by himself.
Oh, boy.  Once again, waaaaaaay too long since I've written.  And it's a good thing you can't see the clutter in my brain, 'cause it would scare you.  I write to unravel thoughts, process them, make sense (sorta?) of this crazy thing we call life.

So anyway, no news is good news?  Maybe? 

The powers that be (who is that anyway??) have put in place a new feeding system.  It was supposed to be implemented a couple years ago, but there was the whole "manufacture enough for the whole country/world" complication, and some other things that hadn't been quite thought through at the time.  Now, most of that has been figured out and the rest, well, us special needs moms are pretty much used to improvising and we share our hacks so it's working okay.

Port on the new feeding system
But along with the challenges of getting supplies, etc, comes a really great benefit.  Now our syringes and feeding bags screw into the adaptors instead of just sliding in.  For us, that means I don't have to hold it tight while pushing a med or a feeding, or even better, burping him.  This is HUGE in our house.  It means many fewer "feeding the bed" episodes, or squirting medicine on myself instead of into him. 

And just in case you really think I'm on top of everything and have it all together, let me share a funny with you.  Our old feeding system had two ports:  a larger one for the feedings or large syringes, and a smaller one for meds.  (Those also had a tendency to open at the least opportune moment.)  Because all the syringes now have the exact same tip, we don't really have a need for two ports.  That's the back story:

Shake it up, baby!
We got our new extension and started using it.  I thought it was fun how they had put "feed me" on the part that the syringe or feeding bag screws into.  It made me smile whenever I saw it, or even thought about it.  I mean, it's such a little thing, but why not?  About a week into the process, I looked a little closer.  It didn't say "feed me."  It said "feed, med" you know, in case anyone wondered what to place there.  I guess it makes sense.  Before we used different ports for food and meds.  So now, instead of being amused by a touch of whimsy, I'm shaking my head and laughing at myself for my lack of observation.

8 pm meds
But Aaron is doing pretty well.  Utah is mastering the whole bipolar weather thing which is always a challenge for him, so he's been getting breathing treatments fairly often.  All week we gave him albuterol every four hours, and we're tapering back to ever six hours this weekend.  So far, so good. 

Evenings are always crazy busy around here.  Because I'm working, I try to do all his prep work at night.  I was thinking about how this really shouldn't be taking so long to get everything done, and then I started looking at exactly what has to happen.

Prepping up his heart med
He gets a shake vest treatment every morning (with his nurse) and every evening with me. 

After that, we do two MDI inhalers and a nebulizer, along with a nasal spray.  He also gets a feeding and six medications or supplements in the evening. 

Ultimate Green Smoothie!
His nebulized medication doesn't have preservatives in it and it comes in glass vials.  Every night, I draw up the next day's doses.  That involves gloves, breaking of vials and filtered needles.  It doesn't take long, but it still...

Our silly boy getting his inhaled heart med.
Then there's his food.  He is doing so much better! on his blended diet.  Again, not a big problem, but it does take time.  The kids are great at helping.  All I have to do is ask them to grab me his things from the cupboard or the fridge in the garage and they know exactly what to get.  All in all, it's less time than the meals for the rest of the family, (think they might go for the all liquid diet thing?) but again, it takes time. 

And there's Aaron himself.  Not only do we need to do his trach and g-tube cares where we clean the sites and make sure they're doing well, but he seems to think it's fun to set off alarms, pulse/ox or ventilator, it doesn't really matter.  He's usually just fine, no issue at all, but we always have to check. 

So there's a whole lot that goes into our evening routines here.  Throw in a soccer game or practice, another activity, kids being run to and fro, and well, I'm afraid you can see how I misread "feed, meds" into "feed me."  But seriously, wouldn't "feed me" be a whole lot more fun? 

Our mountain. 90* one day, snow more than
halfway down the next.  Crazy!
 "If being crazy means living life as if it matters, then I don't mind being completely insane."
Kate Winslet

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."