Looky, Looky!

Checking out Sulley and Mike Wazowski
before our appointment.

Aaron got his new wheelchair today!  Fun times!!!

Everyone has told me that Shriner's Hospital is amazing, and I believed them.  But hearing it and seeing it are two different things.

Snoozin' while everyone else works.
That's his new chair they're building
in the background.

They started with a basic chair and a tray they built for the back before we got there.  Then they spent almost four hours!! building up everything else, figuring where to put equipment, asking if I liked it there, or how it would be better for him.

They listened and reworked things as I explained how we function.  The end result?  Amazing!!

Really, I was blown away.

He looks so grown up!

And that new (to us) minivan we recently got?  Well, let's just say there ain't no way I would be able to lift this new baby into a car by myself.  The seating on this chair is also higher up, so Aaron has a first-class view out the windows as he rides along.  Can you tell I'm pretty happy?

 There's room for everything right where it's convenient.  The vent is easy to see and access, and missing from the picture (because he's using it) is the pulse/ox, which velcros to the top of the ventilator.  Then they created a "cradle" to hold his go-bag to the handle.



On the side is the IV pole which holds his feeding backpack, and then in the front, but much easier to access, is his suction bag.


The seat back doesn't recline like his first wheelchair, but it has a "tilt-in-space' function which lets me tip the whole seat backwards and forwards with a foot pedal.  And the brakes are pretty easy to work and amazing as well.

The oxygen tank and his school bag go between the seat and everything else.

They call this a CR Fusion by Ki (pronounced like "key").  We call it downright awesome.

“Being disabled should not mean being disqualified from having access 

to every aspect of life.” 

Emma Thompson

Week in Review (and We're Still Home)

It's been a busy week, with a bit of an up and down ride.  You might have noticed, I actually wrote twice between last Sunday and today.  Sometimes those thoughts, feelings, emotions, whatever, just won't quiet down until you get them written out.  Kinda like untangling a tangle of yarn and making it straight.

But Aaron is doing much, much better.  I love the way the steroids calm the inflammation and let his lungs do their work.  We went from using albuterol, eight puffs (yeah, 8!) every two hours to 6 puffs prn, or as needed, basis.  I'm grateful for a pediatrician who is willing to look at his record ('cause ours was out of the office) and trust my instincts and call in the medicine he needs.  If I'd had to, I would have taken him to be looked at, but when you're doing a ten minute breathing treatment every two hours plus trying to keep everything else in life going, it makes it a bit more challenging to head out to a doctor's office.  Not to mention the very high likelihood of picking up yet another fun bug while there.

Then there was the trach plug.  I don't know about this 12-year-old of mine.  He's not really into the "holes in the body where there aren't usually holes" thing.  You know, the trach and g-tube.  He still gets grossed out pretty easily.  But he was the one who recognized that Aaron was plugged.  And a few months ago he was asking me about the pulse/ox machine and what would happen if it stopped working.  I thought he was asking out of curiosity.  It wasn't until I "missed" an answer and he prompted me that I realized I was being grilled on my ability to deal with situations.  He's a pretty smart cookie.

Friday evening Matthew opened his mission call.  He's going to the Canada Toronto Mission, speaking English and leaves on September 7th.  He is beyond excited.  I'd tried to get him to tell me where he wanted to go, but he hemmed and hawed, and didn't really give me anything.  Afterwards he admitted that he really hoped to go foreign, but speaking English.  Yep, he's pretty happy.

Yesterday, we had a chance to see Lone Peak's production of Joseph and the Amazing Technicolor Dreamcoat.    What fun!!  I claim Issachar as mine.  It was a riot!  I laughed and laughed.  If you want to see it, there are two more performances, Monday and Tuesday night.  And "Donald Trump" even makes a cameo appearance.  One bit part was played by "Cosmo the Camel."  Yep, they had a real, live camel on the stage, although one of his handlers said Cosmo thinks he's a dog, not a camel.  Afterwards, we just had to get a picture.  Aaron thought it was a riot.

Anyway, looking ahead, we had a beautiful sunny week, with lots of pollens last week.  Next week is forecast to be dreary, rainy, cold, with very little pollen.  I wish I could have the happy weather without the yucky pollens.  Oh, well.  I guess it's the whole "opposition in all things" situation.

AND on Tuesday, he should get his new wheelchair.  We're soooo excited.  This one has been great, and I don't know how many strollers last five years in almost constant use.  Not to mention all the equipment it's had to haul around.  But he's a bit bigger than he was five years ago.  About four times bigger.  And he'll be able to sit up straight in this one.  So yea for new equipment that will help him even more.

Onward and upward.  So fun.

And in today already walks tomorrow. 

~Samuel Taylor Coleridge

It Takes a Village (or a Family)

**Warning:  A couple pictures aren't for the squeamish.  They're kinda gross.

Resting peacefully once he can breathe again.

They say it takes a village to raise a child.  I think maybe I've got enough family members that we might qualify as our own village.  Not to take away from the many, MANY people who help out.  So grateful for all of them.  But today a kid picked up on something I was totally missing.

We had an early morning soccer game, and it's spring soccer.  It's COLD out!  So Aaron didn't go.  When I got home, there was a low alert alarm going off on the ventilator.  He has three different alarm alerts, low (check me when you get around to it), medium, (probably ought to look sooner rather than later) and high (do it NOW).

It was a high pressure alarm which means that the vent felt like it was having to push harder than it should to get the air in.  Usually we reposition him or suction and all is good.  I passed the catheter and really didn't get much.  And his sats were pretty good, too.  But he was working pretty hard to breathe.  He had some retractions (where the skin sucks in a bit under the ribs) and he just looked like it was hard work.  Plus he was sounding growly, or like he was snoring.

Now, I know anyone whose had any experience with a trach is thinking, "It's a plug, Mom.  Change that thing out!"  But I'm standing there, confused, thinking, wondering what the heck is happening.

Then Andrew asks, "Is he plugged?"

"No, I don't think so, the catheter went down pretty easy."

"I think he's got a plug."

Plugged trach on the left, newly cleaned trach on the right.
That discoloration inside is the blockage.

"Hm, maybe."  Stand there watching and listening for a few more seconds.  "Um, yeah, I think you're right.  Actually, I'm sure of it."

And we start moving, fast.  Because while he's still not desatting, this kid is getting tired, working really, really hard.  And if we don't go fast enough, it could start to turn ugly.

THIS is the reason he has a nurse with him at school and at night.  THIS is why I can't leave him without someone who has been trained.

Yeah, Andrew called it.  Big ol' nasty plug in there.

The two streams of water are the same trach, before and after cleaning it.  He's already breathing through a pixie stick, and that mucus plug narrows it so much more.  Instead of water, imagine it being the air he breathes, because yeah, it actually is.


I'm grateful Andrew was thinking and has been paying attention these past few years, because I wasn't.  Grateful for my village.

No man is an island, entire of itself; every man is a piece of the continent.  

~John Donne

Optional vs Required

There are lots of optional activities:

Soccer or dance.  Running or walking.  Even sleeping (sorta).

You can chose to eat white or wheat bread, or even no bread at all.

You can chose what to wear, where to go, even whether or not to shower, although you may find fewer people want to be around you if you don't.

But breathing??

Breathing is not optional!!!!  

Can someone please clue Aaron in?  

Asthma is going crazy.  We're now on breathing treatments every two hours and have started an emergency course of steroids.  We've bagged him a few different times already this week.  

I love our gorgeous spring weather.  I'm hating what all the pollens are doing to him.  Praying we can weather this bump at home.  

Saturday vs today.  

Oh, and Matthew  has his LDS mission call.  He's opening it tomorrow night.  How can I be old enough for my FIFTH child to be doing this??

He lives most life whoever breathes most air. 

~Elizabeth Barrett Browning

Crazy Week (In a Good Way)

So happy to be back at church.

Quick update on the highlights of our week, 'cause you know, we're in that race to the end of the school year where everything seems to move at lightning speed, except me.

On Monday, Aaron had another post-op visit from his right ear surgery.  It's still healing well, his hearing wasn't further damaged, and it actually might be a little bit better.  I took the time to ask Dr. ENT about the surgery for his left ear, which was scheduled for the 20th.  Yeah, this week.  But because he'd been sick, and because we've had so much "fun" doing surgery right after an illness, we're pushing it out.  Protocol calls for six weeks for pneumonia, four weeks for a cold.  But with all of Aaron's challenges, any surgery has a higher likelihood of complications that it would for a typical kid.  Put it too soon after an illness and you're playing Russian Roulette.

Dr. ENT suggested that we do it the first part of June.  I laughed.  It's still six weeks away and the calendar is already filling up.  So we're looking at July 5th.  Happy Independence Day to us, right?

He also went to soccer games, although we watched from the car because it was pretty chilly outside.

Then today, we took him back to church.  He doesn't go during the winter.  It's just simply not safe.  Way too many coughs and colds and people who don't stay home when they're sick.  But oh, was he happy to be there.  Big, big grins the whole time!

His nose has continued to run, pretty much all week, but it's also stayed clear, so we're calling it allergies.  He's finally managed to go back to prn breathing treatments.  He gets his new wheelchair in about ten more days.

Yep, life is looking pretty good right now.

"Happiness is an occasional brief glance into how simple it all can be."

Robert Brault

Spring Break 2016

Heading out to play on Friday.

 What a difference a week makes.

From this:  

Last Sunday, watching Conference in the PICU.

To this:

Friday morning on the roof of the
Conference Center

 A week ago, we were sitting in the PICU watching Conference.  Friday, we were on the roof of the Conference Center.  I've told you this can be a rollercoaster.  Right now, we're riding up high.  It's a pretty good view.

The last few spring breaks, William has taken a group of scouts on service trips to various Indian reservations.  Which leaves me and whatever kids can't make the trip at home.  We usually try to plan fun things to do, but sometimes Aaron's version of "fun" is a bit different than the ours.  I also have "projects" I try to get done.

This year was a combination of the two.  We spent the first few days in the hospital and Matthew and Michael held down the fort (or at least didn't blow it up) at home.  We got sprung from the joint on Tuesday and spent the next couple of days close to home trying to get things done around the house.

Some "excitement" that I hadn't mentioned gave us a bit of stress right before Aaron's hospital stay.  He had a microfiber pillow that we'd used off and on since he was tiny.  Well, Wednesday before he got sick, he got a hold of that with his teeth and ripped a hole in it.  Think thousands and thousands of tiny poppy seeds everywhere, except they're white.  Ever vacuumed your child?  I have.  That pillow is now gone and never coming back.

But his weighted blanket was also showing signs of wear and while those beads are bigger, they still have the potential to land in his airway.  So on Thursday, Michael and I made him a new one.  Michael cut up the old one so we could save the beads and I sewed up some fabric I found in the basement.  New blanket!  I don't know that I would have done it without the help.

He's also gotten good at undoing the velcro on his trach ties, so we made him a couple of beaded trach chains.  I'm hoping they also help get rid of the redness that he's dealt with around his neck.  They shouldn't chafe or hold in wetness nearly as much.  And the biggest part, he doesn't have the dexterity to undo them.


On Friday, we went up to Salt Lake.  Michael had fun hefting a stone with a pulley system similar to the ones they used to build the temples prior to modern equipment.  Aaron thought it was pretty cool what big brother was up to.    But the favorite part was the roof of the Conference Center.  It really is beautiful up there, doesn't even feel like you're on a rooftop.  It's four acres and has fountains and vegetation that you'd find across the Salt Lake Valley.  Michael pushed Aaron up and down the ramps and all over the place, giving me a much appreciated rest.

Tomorrow is back to school, and back to "normal life" (whatever that is).  Aaron has a post-op appointment from his first ear surgery and we'll consult with Dr. ENT about whether we need to push his next one out further since he was recently sick.  I think we probably will, but I guess we'll see what he thinks tomorrow.

It may be a crazy life, but hey, it's ours.  We do what we can, when we can, the way we can.  And we try to appreciate the journey.

“Maybe it’s not about the happy ending. Maybe it’s about the story.”

Author Unknown

Home!

Playing in his tent bed.

Well, we made it home, just about 24 hours ago.

When you finally decide to start turning sideways, and refuse to stay upright (where it's easier to breathe) it's a sure sign you're on the mend.

So yesterday we finally managed to make it all the way to the first floor and out the door.  Now, we're trying to get caught up on sleep and back into the swing of things.  Or at least I am.  Aaron is still pretty much turned around.  He thinks nap time is 7-9 p.m. with sleep time from 4 a.m. to noon.

Silly child.  Going back to school next week is going to feel like a rude awakening, literally, for him.

Run away!!

If I had my way I'd make health catching instead of disease.  ~Robert Ingersoll

Some Much Needed Counsel and Reminders

General Conference in the PICU

 This weekend was General Conference.  Twice a year, The Church of Jesus Christ of Latter-day Saints (the Mormons) hold a world-wide conference where we hear counsel and direction from our leaders.

Oh, how I needed it.  I listened yesterday as I drove home for a few hours and nearly cried as I felt the comfort, the strength, wash over me.  As President Eyring opened the meeting and reminded and promised that we would receive personal guidance and direction as we trusted in the Spirit, I felt the truth of his words.

Then as others spoke about our divine nature, our eternal families, I knew and remembered that yes, I know these truths and they anchor and guide me.

Always one of my favorites, President Uchtdorf shared tender childhood memories of war-torn Germany and the rebuilding of the Frauenkirche in Dresden.  They used some of the original, fire-blackened stones in the reconstruction.  He said that scars are not only a reminder of the past, but also a monument to hope.  I loved that idea.  And he told us that if man is capable of reconstructing a building such as this, imagine what God can do with repairing and rebuilding our lives if we will but let Him.

I've struggled lately.  I seem to go in cycles.  But I've been feeling the "world is too much with me" (sorry Wordsworth). I haven't felt the peace and calm I need.  I've been irritable, worried, uptight.  And I'm not just talking about Aaron and his needs.  This has been an overall theme for the past several weeks, maybe months.  I needed these peaceful gentle reminders.

Leaving the PICU.
Moving this kid creates a logistical challenge.

And probably the best one of all came in the opening hymn to this morning's session.  I'm sitting in an ICU room with my son.  My son whose condition is "incompatible with life."  And the choir sings, "My life is a gift; my life has a plan.  My life has a purpose, in heav'n it began.  My choice was to come to this lovely home on earth, and seek for God's light to direct me from birth."

YES!  His life, my life, your life, it is a gift.  A precious, wonderful, tender gift from our Father.

After the morning session was over, my silly, goofy son was finally transferred up to the floor.  As he left the PICU, the doctor told him that they weren't saving his bed space for him, so he needed to simply get better and head on home.  I'm hoping he listened.  He's still using too much oxygen to go home tomorrow, but maybe it's not too many more days away.

His cousin is also hanging out up here and he and his parents came by and said "hi."  My brother-in-law said the reason we're still here is because we've made it too fun for him, no wonder he's partying.  He does have a pretty cool set-up for his bed.  But I'm hoping that he remembers it's also fun at home.

And I'm grateful for the reminders of my Heavenly Home that I hope someday to return to.  \

Life: It is about the gift not the package it comes in. 

~Dennis P. Costea, Jr.

Stalling...

I'm not sure what game this kid is playing, but he's stalling for something.

Yes, we're still here.  "Here" as in "here in the PICU."

Every night, and for that matter, every morning at rounds, he's looking pretty okay.  He's still pretty high for home but we can certainly plan on going to the floor.  The problem is that when we talk about this, he's sleeping.  See, his idea of a perfect sleep time is 2 am to noon.  (I think I know others who feel the same way.)  And when he's sleeping, he's not needing as much oxygen, so he looks really good on seven liters.

But then he wakes up and starts moving around.  And his heart will start shunting more unoxygenated blood through the holes in his lower chamber, which causes his sats to drop.  So we turn him up.  He gets more active, he needs more, and so it goes.  He'll actually be stable at seven to eight liters for quite a while, but it creeps up, every, single, night.

Once again last night he was on 12 liters and struggling to get out of the low 80's, so we had to bag him, again, and yep, he's still sitting here, waiting for something.  The problem is, he won't tell us what it is.

(Can you tell I'm starting to get a little frustrated?)

Anyway, March is over and spring is supposedly here.  Spring with all the new life and new hope.  It's also "Give Life" month.  Yesterday, I was able to listen as a dear friend spoke at a flag raising about her daughter's heart, her second heart, a heart that beats for her after her own tattered heart was too tired to go on, and the beauty of that gift for their family.

I urge you, if you haven't taken the moment to become a donor, please do so.  You can give so much to others.  Even Aaron will be able to donate what organs are still viable.  Save a life, save a family.  Find hope in your own heartbreak.  Live on through others.

“I am only one, but still I am one.I cannot do everything, but still I can do something; and because I cannot do everything, I will not refuse to do something that I can do.”

Helen Keller