Sunday, September 29, 2013


It's happening again.  A bunch of thoughts running around and around, scrambling up my mind.  I'm hoping this is coherent.

We hear all our lives about balance.  As a child, you balance on a bike, you balance on the curb.  Your mom tries to get you to eat a balanced diet (does cookies and fruit count? Flour, eggs, fruit, um, other stuff..  Could that be why I've been feeling sluggish?).

When we grow up, it's balance God, work, family, alone time.  Sometimes instead of balancing, it feels like you're spinning plates on top of broomstick poles.  And you have to keep running from one to another, and sooner or later, they all come crashing down around you anyway.  I don't think that's balance, but it sure feels familiar!

We've been trying to find our new normal, our new balance here for a while.  And quite frankly, Aaron weighs very heavy on one side of the scale.  But the other kids also have needs, as does my husband, and extended family, and, and, and...  And somewhere, I also have to find a way to fill my bucket.  'Cause an empty bucket ain't gonna fill no one else's.

But it's funny.  It's not until I stop to think about it that I realize what's happening.  (Maybe I need to stop a little more often.)  Here's what I've realized.  I'm not alone on the other side of the scale.  I've got a lot of help, both temporally and spiritually.  And often, that help comes directly from some of the sources with the needs.

On Thursday night, Matthew (sophomore) was stressing about an in-class paper he was going to be writing on Friday.  I should have been able to help.  After all, my degree is in English.  But I was busy working on something else in the kitchen, probably Aaron's food or dishes or something.  And then I heard his brother step in.

Jonathan took that same class (as did the three older than him).  He knows the teachers, the material, and what's needed.  It warmed my heart to listen to the two of them discuss it.  And quite frankly, he did a much better job of explaining and giving examples that I could have.  I loved that he took the time from his very busy schedule of homework and dance and preparations to help his younger brother.

And that's when I realized, once again, how much everyone kicks in to keep our family going.  William holds down the fort when I'm at the hospital.  Deborah was definitely my right-hand man (woman?) until she moved out.  Jonathan spends a lot of time driving his younger brothers around and helping out with homework explanations.  Matthew and Joseph have jumped in with helping keep things clean around here.  Even Andrew and Michael have taken a real interest in the kitchen.  Let me tell you, Andrew (10) can whip up some really great eggs!

And Aaron and Mary and David keep reminding us what life is really all about.  It's about our Father's love for us.   It's about the Atonement and the redeeming love of Christ.  Mary and David are giving up a significant part of their lives to try to tell others about this love, about eternal families.  And Aaron, well, he's brought that love right into our home.  How blessed we are.

And so while it may take me a week to get to the laundry, and then most of the day to climb Mount Washmore (thanks, Sweetheart for taking care of the socks, my least favorite part!), and meals are sometimes last minute creations, it's okay.  We may teeter back and forth a little on this balance thing, but we haven't fallen.  At least not much.  And when we do, we'll get back up and try again.  We are here to succeed.  And we will.

“The major work of the world is not done by geniuses. 
It is done by ordinary people, with balance in their lives, 
who have learned to work in an extraordinary manner.” 
 Gordon B. Hinckley

Wednesday, September 25, 2013

How to Win Friends, Influence People, and Keep your Customers

Today started off with a bit of a bump.  Aaron had a pretty good night.  I warned his nurse last night that one of his pulse/ox probes (the disposable part that's often finicky) was acting up.  It was occasionally saying "bad sensor" but other times would read just fine.  Overnight, she had no issue with it at all.

This morning, as I was getting him ready for school (he was SOOO excited!) I was changing the cord from one foot to the other.  "Bad Sensor."  (Yeah, bad, bad sensor, behave yourself!)  So I switched it back.  Still "bad sensor."  Got a new one probe sensor out.  Guess what?  You got it.  "Bad sensor."  Um, maybe it's not the sensor?  Maybe it's you, machine.

So I made the phone call.  And got a machine.  Called another number, got a machine again.  Um, yeah, I can leave a message, but what guarantee do I have that anyone will hear it anytime soon?  I mean, I don't know how many messages have been left and when they'll get around to it.  Called a third number, and this time I get a person.  She can't find anyone, and also offers to have me leave a voicemail.  I didn't think that was going to work.  I'd already left two.

And here's my thing (or things, maybe).  Aaron NEEDS to stay within his optimal oxygen saturation rate.  Actually, we all do.  But due to his somewhat funky makeup, he can be all over the place.  That's why he has the machine, to make sure we titrate his oxygen to his needs.  And not being in that optimal range, and not fixing it, well, I'm tired of being at the hospital.  And even worse would be not ever needing to be there again.  So it's kinda important that we have working equipment.

And we're talking about life support equipment.  Life support, yeah, the stuff that supports life.  And no matter how much science is getting excited about creating life, well, really, it's still one to a customer.  So it's not a 9-5, Monday through Friday kinda thing.  There should be (and I know from previous experience there has been) always, ALWAYS, someone available.

So here we go, about 7:15 a.m., and nobody can be found who can help us.  I have to admit, I got pretty irritated.  Frankly, they probably don't pay her enough to listen to my lectures.  But she did, and very nicely, too.  But the long and short was, the office didn't open until 8.  And she did try to find someone.  Somehow, after we hung up, she did find someone.  Because that someone called me at 7:45 (yep, office not open yet) to let me know she was working on an exchange ticket.

At 8:05, the first person called me back to find out if anyone had been in touch with me.  Now THAT is customer relations.  She didn't have to.  She did her job (and then some) by listening to me complain and then taking the message.

Very shortly after that, our respiratory therapist called about it, too.  And when I explained what had happened not only to the machine, but also that morning, HE got on top of things as well.  He called me back again a little bit later to see if I could help him out with the timeline, because he was now spending time trying to find the breakdown in communication and fix it so it wouldn't happen again.

I've heard that in business, it takes ten very satisfied customers to make up for one disgruntled one.  It makes sense because as humans, we're much more likely to tattle on the bad times than we are to share the good ones.  Well, I have to say that IHC Homecare has taken very good care of Aaron from the beginning, the very first time he came home from the hospital.  And there have been a couple of glitches, but they're minor.  And what really matters to me, is that they take the glitches and look into them, and work hard to fix them.

They've got my back, and they've got Aaron's back.  And I couldn't ask for more.

Customer service is not a department, it’s everyone’s job.

Tuesday, September 24, 2013

Everything in the Mouth

Many special needs kids have what's called an "oral aversion."  Yeah, big name (tend to find those in the medical field) for "don't you dare put anything near my mouth!"  Um, not Aaron.

I think it happens because for those in the hospital, oral suctioning (yeah, what your dentist does, wonder why we hate the dentist?) happens a lot, a whole lot.  It makes sense, especially for little ones.  I mean, you really don't want all that saliva, spit-up, whatever, ending up in the lungs.  So they suction it out.

But Aaron was different.  He was only in the hospital for two weeks and two days.  And when he got home, we had a suction machine, but it was usually in the other room.  So I did with him what I did with my other babies.  You know, the ones that didn't have a ton of medical equipment.  The ones that had me, some diapers, and a burp cloth (or hand towel in the case of some).  When he spit up or drooled, we just mopped him out. 

So Aaron does what any normal baby does.  If he can get a hold of it, it goes in the mouth!  Tubes, wires, toys, bibs, pillows, anything and everything!  At one time during his last hospital stay, he had his IV in his left hand.  He even tried to get the locked end of that into his mouth! 

On the topic of his last hospital stay, he's still getting better.  I'm on the fence about whether or not he goes to school tomorrow.  I think we may just take the rest of the week off and start fresh next week.  But he's improving every day!

Here's what it was this morning, some of it.  What you don't see is his pulse/ox cord (trying to convince him that chewing on electrical wires is a bad idea), the blanket, and his feeding tube.  I've also tried telling him that he doesn't eat that way.  But that's okay.  It's another way for him to explore his world. 

“Equipped with his five senses, 
man explores the universe around him
 and calls the adventure Science.”
― Edwin Hubble

Friday, September 20, 2013

Almost Outa Here!

Well, we’re almost out of here!  We’ve got papers signed, prescriptions filled, and even got clothes on!  Just one more CPT treatment with the vest and we’ll be on our way! 

He’s even got his BYU Blue on, rooting for the good guys to win tomorrow.  Hey, turnabout is fair play and I’m thinking that after the last three years, it out to be our turn again.

He did have a great time with music therapy.  This little man loves his music, the prayer of the soul. 

He’s still pretty junky, so we’ll be playing it close to home for the next few days.  But that’s where we’re looking at hanging out, at home, our real home, instead of this vacation home that he’s been visiting a little too much lately.

O Rise and Shout, the Cougars are out.
Along the trail to fame and glory.  . . .
We’ll raise our colors high in the blue,
And cheer the Cougars of BYU!
Go Cougs!

Wednesday, September 18, 2013

Started Our Countdown a Little Too Soon

Well, the title kinda says it all.  He continued to do well through the night, and we hit the magic three liters about 4:30 this morning.  Yea!  Start the clock.

Well, I guess the reason we have that countdown clock is to give things time to manifest if they're going to.  It's not a big setback, but by about 10 a.m. he was saying he wasn't quite ready for it.  William and I figured that we'd just not turn him up.  Therefore, he'd be at three liters and we could come home.  That works, right?  Well, Aaron had other ideas.  And when I was seeing 79%, I figured maybe that plan wasn't going to work. 

No, really, we didn't really make him get there before doing anything.  But he did bump down there for a minute or so.  We tried to help him maintain, did some physical therapy to move things around, did CPT and a breathing treatment, even changed out his trach.  And yeah, we got some really good goobers out (better out than in, right?).  But he still wanted four to five liters to stay in his high 80's low 90's.  So the clock stopped.

I don't think I'm going to say anything about it again until we're at about 23 hours, or at least well past the 12 hour mark.  But he's happy and playing.  I just need to figure out who it is that he's waiting to see up here and get them in to say, "hi".  Then maybe we can go home! 

Plus, it's rivalry week here in Utah, and while I'm a little conflicted, on account of these crazy Utah fans who take such good care of him, I still bleed BYU blue.  AND every time we've met up since Aaron was born, BYU has got their hiney kicked.  I'm thinking it's payback time.  But I'd still rather not be up here for the  game.  Go Cougars!!

If you can find a path with no obstacles,
it probably doesn't lead anywhere.
~Frank A. Clark

Tuesday, September 17, 2013

Little Purple Pansies

A picture my beautiful daughter took for me of pansies
we planted the year Aaron was born.
I thought I'd take a moment and explain the purple pansies in the background on his blog.  As a small child, I was taught the song, "Little Purple Pansies" that's over on the sidebar.

There were several parts that appealed to my little girl soul.  There was the touch of gold (yea! gold) and they were tucked away in the corner of an old garden, almost forgotten.  But in that dark cold corner, they did their part to brighten their little portion of the world.

Then, I think it was the first year we moved here, I watched as gardeners were putting OUT pansies at the end of the summer, as the days turned chilly.  And that's when I found that these fragile-looking little blossoms were some of the hardiest plants.  They weren't put in the corner of the old garden to protect them.  They were placed there because they could thrive there where few other flowers could.  And the deep purple, combined with the splash of bright gold drew the eye and gladdened the heart.

I think Aaron is like the purple pansy.  He looks so fragile, and in many ways he is.  But his soul, his spirit is strong, determined, and valiant.  He brightens and touches each person who knows him.  And it's not a "oh, look how much better off I am and what I could be dealing with" kind of thing.  He just makes you feel better, want to be better, because of the love he radiates.

And through the miracle of modern communication, Aaron's world is bigger than most.  He, himself, hasn't traveled much.  In fact, except for a couple of family reunions a few hours away and trip to Arizona last summer, his entire life has been lived within two counties in one state.  But he still manages to reach out and touch people around the world.  And they in turn, bless him and lift him up in prayer, and bless other's lives as well.

There's not a whole lot to report today.  Aaron transferred to the floor yesterday so we could keep working on getting his oxygen down to where it needs to be.  So yea! he got out of PICU, but we're still locked up in the Big House.

There wasn't much improvement overnight, but he's very happy, so that's good.  We've added albuterol every six hours and it might be helping.  At least we've seen more junk and it's yuckier in the hour after a treatment.  So hopefully it's helping mobilize it.  But we're still stuck at 5-6 liters of oxygen, just waiting for him to figure it out and get it together.  He'll get it.  Just not sure exactly when it will happen.

Blessed is the influence of one true, 
loving human soul on another.
George Eliot 

Sunday, September 15, 2013

Slow and Steady...

We're still moving in the right direction!  He needed a lot of oxygen last night when he made the jump to his vent, but he maintained through the night.  This morning, they even took the hospital vent out of his room!  (They had left it in here in case we needed to switch back.)  His blood gas, a measurment of how he was doing with oxygenation and also getting rid of his CO2, what we breathe out, was also great.

But he was on too much oxygen for the floor to feel comfortable taking him, so we've hung out in the PICU for another day.  Right now, he's on eight liters of oxygen, down from ten to 12 last night.  So still going the right way.  I probably shouldn't say this, may jinx ourselves, but we haven't had a bump yet, very unusual.  It may still be out there but it's looking less and less likely. 

We've added in albuterol ("all-better-all") just in case that might make a difference.  Not sure yet, but maybe.  At least his heartrate hasn't gone up when he's gotten it.  That's usually a sign that he needs it.  See, albuterol raises the heartrate.  Except, if he's already working too hard and it makes breathing easier, it will actually lower his.  It's when he isn't working hard already that it increases.  So maybe...

But anyway, how's he doing, Aaron, my monkey?  Yeah, he's doing just fine, if he does say so himself.  Take a look at his position in his bed.  When you're in the hospital, especially when you're in bed most/all of the time, they like to keep your head elevated.  It helps cut down on the risk of pneumonia. 

Except here.  It's been more than two minutes (but less than five) since his nurse repositioned him.  So yep, he's sideways, with his legs sticking out, chewing on that pillow that he's supposed to be propped up on.  He's feeling pretty good. 

I'm not sure when we'll get out of here. He needs to be on three liters or less for 24 hours for that to happen. It won't be tomorrow, and maybe not Tuesday either. But it's coming.  And we are so grateful for all the prayers and faith and skills of those who take care of him who will make it possible.

Adopt the pace of nature: her secret is patience. 
~Ralph Waldo Emerson

Saturday, September 14, 2013

Attempting the Jump!

This afternoon, about 5 p.m., Aaron was switched from the hospital vent (the Draeger) to his home Trilogy ventilator.  He's on a LOT of oxygen right now, 12 liters, but if he can maintain himself on his regular vent, it's a huge step in the right direction.  As long as he's looking good, they'll run a couple labs in the morning just to check.  And even if we have to call off the trial, he's still moving in the right direction.  He may just not be quite as far along as he needs to be.

The machine in the background, the one on standby, that's the hospital vent.  The one in the front is his ventilator.  Here's hoping we can keep the setup the way it is.  It's one more step on our way out of here.

And if he needs more time, well, that's okay.  Ever since he perked up on Tuesday, since he got that "spark" back, I knew that we could work through this.  So it's all good.  It just takes time.  And that's something that we can give him.

Time! The corrector when our judgments err.
-Lord Byron

Bouncy Ball

You know how a bouncy ball works?  You know when you first drop it, it bounces back up, pretty close to where it dropped it from?  And then it gradually bounces lower and lower and finally settles on the ground?  Well, that seems to be what Aaron is doing.  Each day, his low oxygen requirement is lower than the low of the day before, and his high requirement is lower than the high of the day before.  But in between, there's a lot of overlap.

So he's still making progress, and it's pretty good progress, but we've got a little further to go before he can come home.  He's having fun, though, hanging out here and seeing old friends.  He's turning sideways in bed.  And we're putting the side rails on the crib up higher now.  Not to keep him in, that's not a problem.  To keep the toys in.  See, there's enough really nasty germs around a hospital that if a toy hits the floor, he's not getting it back before it can be disinfected.  That three-second rule?  Yeah, non-existent in the hospital, even for healthy people.

We might try the jump to his home vent today.  We'll have to see how things go.  Or they might give him another day to work on his high oxygen needs first.  In any case, slow and steady will win the race.

The drops of rain make a hole in the stone not by violence but by oft falling.  ~Lucretius

Thursday, September 12, 2013

Making Progress

We're seeing progress here!  I'm not going to put any kind of feel on when we'll break out, 'cause that just invites fate to step in and change things around.  We've done too many of these "one step forward, two steps back and a slide to the side" to discount that possibility.

For the record, let me clear up some possible confusion.  We use percentages of oxygen in two different ways, in fact almost opposite ways.  There's FiO2, which is the amount of oxygen being delivered through the vent.  In this case, the lower the number, the better.  Then there's his sat rate, or the amount of oxygen saturating his blood.  This time, the higher the number the better. 

For example if he's on 25% FiO2 and satting 95%, that's awesome!  But if he's on 95% FiO2 and only satting 72%, that's bad, in fact we've probably got extra help in his room if he's sitting there for very long.

So for the past couple of days, his FiO2 range has been 65-100%, with most of the time spent at 90-95%, a whole lot of support.  But we have been able to maintain 90% sat rates as opposed to Sunday when he had some bouts with that 72% sats on 100% FiO2.

Today, we've been high, like up in the 90's FiO2, but he's also been a lot lower, and spending time down lower.  Right now, at this moment, he's on 45% FiO2 and maintaining 93% sats.  When he wakes up, he'll probably need more, but still, this is big progress.  He's also back on his home feeding schedule.  That's got to feel good to have a full tummy again.  I know I always feel better when I'm not hungry.

So, the steps we need to take to get out of here.  He's still on the hospital vent and he'll need to drop his oxygen usage (FiO2) a little more before we can try to transition back.  Then he needs to be using three liters or less (his vent measures oxygen differently than the hospital one) for 24 hours.  And like I said, I'm not even going to verbalize a guess as to when that will happen.  But I do know that generally, when Aaron decides he's doing okay, he makes progress pretty quickly.  So onward and upward, or downward, as the case may be.

"A sacred burden is this life ye bear. . .
But onward, upward, till the goal ye win."
-Francis Anne Kembel

Wednesday, September 11, 2013

His "Spark" is Back!

Aaron kept me up most of the night, but in the best of ways.  He was laughing and playing and pulling his leads off.  All. Night. Long. Yep, his "spark" is back. 

He's still on way too much oxygen, 70%, but we can work with that.  They're also in the process of weaning off his nitric oxide as it doesn't seem to have helped at all.  He's also still getting his shake vest treatments.  That one he thinks is a spa experience! 

We've got a ways to go before we can start thinking of going home.  He's on continuous feeds right now because he was struggling with larger volumes he usually gets.  We need to work back towards that.  He's on too much oxygen right now to switch back to his ventilator.  He needs to reduce those needs, make the switch, and then reduce again to where we can safely have wiggle room at home.  It's not going to happen overnight.  But he's on the right track.

From left to right, the hospital vent that almost thinks for itself,
much more sophisticated than his vent. The nitric oxide,
currently being weaned off of. The shake vest and machine,
yeah, he likes that one, a lot!
In an interesting development, the protected trach brush culture has grown out something.  (That's where they take a swab of cells from down in the lungs.)  It's growing out the same bacteria we were treating just a few weeks ago.  I'm not sure what it means, but his last antibiotic treatment, through his PICC line was almost exactly a week before we landed back in here. 

But it's still the virus, rhinovirus, the "common cold" that's got him.  There's starting to be a little bit of talk about how maybe it's mutated once again and that's why it's hitting so hard.  There are a lot of really sick kids up here with it, more than they usually see, and sicker as well.  I'm starting to feel like a broken record, but PLEASE, wash your hands and avoid people, stay home, if you're sick. 

On another note, it's September 11th, 9/11.  I am so grateful to be living in this great country of ours.  On that day 12 years ago, I had gotten up early.  I can't remember why.  But the alarms in the house went off at 5:50.  That was 8:50 a.m. Eastern Time.  I was in the kitchen making lunches for school and I heard William get up and head straight downstairs.  I thought that was a little odd as he usually didn't come down right away. 

He put his hands on the counter and said, "Life as we know it has just changed."  I immediately started trying to figure out what had happened in Arizona or Utah, as that's where the majority of our extended family was.  He told me a plane had just hit the World Trade Center. 

My dad is a pilot and I was trying to figure out what kind of idiot was behind the controls on a plane that couldn't miss the World Trade Center, because obviously it wasn't an experienced pilot.  And what kind of an instructor let such a person fly the air space above Manhatten anyway.  It was when we turned on the TV and I saw it,that I realized it was no accident. 

Oh, my heart ached for the people in those towers, in the planes, for their loved ones.  I remember that just after the news announced that all the planes in the sky were now on the ground, a jet flew by overhead.  It was a military plane, taking blood products back towards New York.  Blood that was sadly not needed.  We participated in a candle lighting ceremony, and "God Bless America" brought tears to my eyes in a way that it hadn't before.  May God bless our great nation.  May He draw us closer to each other and closer to Him.  May we never, never forget...

My friend asked me the essence of life and I smiled. 
~Mike Dolan

Tuesday, September 10, 2013

Tincture of Time

Last night there were gut-wrenching sobs on the unit.  A young man was curled up against a wall, head buried in his hoodie, other family members standing around outside the room, sobbing quietly.  It doesn't take a detective to know it wasn't a good thing.  A sweet soul, much loved, slipped Home last night totally unexpectedly.

It kinda brings things into perspective.  Aaron's struggling, a lot still, but he's making progress.  I think they'd like to see it coming faster, but it is coming.  Yesterday, he needed somewhere between 65% (only stopped there for a few minutes) and 100% oxygen which isn't really a good thing.  But since we maintained 85 or better sats for the vast majority of that time, I like it.  See, the day before, he'd had times where we struggled to get above 72 on 100% oxygen.  And funny, people talk about giving "110%" or "200%", but really, you can't give more than everything, 100%.

Wanting to see more progress, we increased his PEEP back to ten, where he was from when he was trached until March when we were trying to wean off the vent.  That I was fine with.  But when they started talking about increasing to 11, I asked them to be cautious.  His lungs were always pretty hyperexpanded at ten and I didn't want to risk blowing them out (yeah, crazy mama).  So when he'd spent several hours at 90 to 95% FiO2 (amount of oxygen delivered), they decided to add on nitric oxide (NO) to help dilate his lung blood vessels to help him.  The jury is still out on whether or not it's working.

When the team rounded just now, they talked about time.  A friend of mine who's also a pediatrician once said that "tincture of time" was her favorite.  And sometimes, that's just what you've got to do.  So we'll do it.
I know he's being lifted up in prayer.  Please keep praying for healing.  My biggest fear right now is what happens come Thurday or Friday.  See, in the past, he's done pretty well through his first few days of a cold.  It's about day five to seven that his pulmonary hypertension usually kicks in and we need help.  I'm really hoping that this is one of those that comes on fast and furious and then just coasts to a stop.  'Cause if that's they way it plays out, we're probably over the hump.  If not, well, please just keep praying.

Who forces time is pushed back by time; 
who yields to time finds time on his side.  
~The Talmud

Monday, September 9, 2013

Baby Steps

Some of the first smiles we've seen.
Aaron is sick, very sick.  But we've also seen some smiles.  Music therapy was in this morning and playing songs for and with him.  They had a little shaker that he loved, and was on the beat with!

He's been pretty miserable, especially when his nose is getting suctioned out.  I don't get that one.  I mean, doesn't every three-year-old love to have their boogers taken care of?  It breaks his heart, but it also helps him breathe better, once he calms down again that is.

He's more consistently on 90% FiO2 (oxygen through the vent) than 100% but we've only bumped 70% a couple times.  In contrast, because of the different set-ups, he can only get about 60-70% total on his home vent when he's using 10 liters of oxygen, and our goal is to stay below 40%.  But that's a goal that's going to have to wait.  Right now, it's about giving him whatever he needs to keep breathing.  'Cause that's kinda important.

Getting a shaker-vest treatment to loosen up the junk.
He thinks he's at the spa, lucky kid.
Yesterday, we had a few spells where even on 100% FiO2, it was hard to get him above the very low 70's on his oxygen saturation.  Today our goal is to not have that happen.  There's a few tricks we can still pull out.  They may sedate him a little if he struggles again, we may increase his PEEP a tiny bit.  Or if it persists, even the way it is over the next 24+ hours, we may look at using nitric oxide to help open up his lungs.  We've used it before with good results, but there are always challenges, too.

So we've had "the talk" with a couple of doctors already.  How far do I want them to go?  What's our plan?  Can I say that while I know it's important to keep the lines of communication open and clear, I HATE these talks.  And as far as I'm concerned, right now, nothing's changed.  He's still a full code.  There will come a time when he's done and ready to go Home, and it will break my heart.  But I'll listen, and I'll acknowledge it.  But I don't believe that time has come.

Our challenge right now is to give him the support his little body needs to work through this virus.  And it looks like that's "all" that's going on.  None of his cultures taken Saturday evening are growing anything.  Man, I've never liked colds, but I've now truly learned to hate them.

So we'll baby-step our way back to health, one smile, one treatment, one song at a time.

Singing a bedtime song to Aaron

Start by doing what's necessary, then what's possible, 

and suddenly you are doing the impossible.
St. Francis of Assisi

Sunday, September 8, 2013

Head to a Picnic, Land in the PICU

Yeah, that title kinda sums it up.  I think Aaron got his P's mixed up.  Yesterday was the annual local SOFT picnic.  It's something I look forward to all year.  And Aaron was doing pretty well.  He was tired, but he's been playing the "play at night, try to sleep during the day" game.  And he's been in school, too.  I tried to tell him that sleeping in class wasn't a good idea.  The kid thinks he's a teenager.  But it was crazy fast how things have played out.  As best I can remember, here's the way it happened.

Friday night, we were at Grandma's house for a movie night.  Aaron was pretty tired (see the above) but he did okay.  He did start crying a little bit during the movie, but I held him and comforted him and he settled down pretty good.  Saturday morning found us at Matthew & Joseph's soccer game.  Again, tired from being up all night and towards the end of the game, a little sad.  But he'd had a lot of clear stuff running out of his nose and I got tired of wiping it, so I suctioned it out a bit.  He enjoyed that every bit as much as you can imagine any other three-year-old would.  So he cried.

Our special kiddos, every one of them a blessing from God.
Saturday at noon, we loaded up to go to the picnic.  Because life is crazy in our home, Aaron, Joseph and Andrew were the only ones that were able to go with me.  And Aaron was excited!  Lots of smiles and wiggles.  But by the time we got there, not so much.  In fact, he spent most of the picnic either sleeping or sad.  And that nose, well, it was running a whole lot more and starting to turn yellow (too much info?).

We were almost all the way to Primary's at the time, so I debated about whether to take him in for some labs and a check before heading home or not.  Finally I decided that I was still just too on edge from our last bout and wanted to be sure.  Turns out it was a really good choice.  So I hauled Andrew and Joseph out of the pool and we took off.  I was also hoping that it was early enough in the day that it wouldn't take too long to get things done.  I was WRONG.

We got to PCMC just before 4 p.m. and it was busier than I've seen it before.  Not that there were many there, but it has a huge emergency department, and you rarely (or I rarely) wait long at all in the waiting room, or see others there.  But this time there were five or six of us waiting, and then when we got back, there was a lot more waiting going on.

No fever, heart rate slightly elevated, still lots of boogers in the nose, nothing from the trach.  They weren't quite sure what to do with us, and even after the chest x-ray (normal Aaron) and CBC, it wasn't for sure.  His white blood count was up, but not by much.  And his CRP (stress measure) was totally normal, not just for him, it was practically non-existent.  Blood gas also looked good.

But we did have an incident in getting the x-ray.  He started desatting (amazing how fast the room can fill when a kid of mine opens the door and says, "he's desatting and it's real and we need help) and we ended up bagging him for a few minutes.  That did sway them towards staying, but it was still a big iffy.

Then Aaron decided to take matters into his own hands.  He wanted six liters of oxygen, not five, not five and a half.  Six, minimum.  Plus, he started running a fever and we started pulling all sorts of nasty junk out of his trach.  First time we'd seen it.  So then it was, PICU or floor.  After a lot more discussion (the boys had time to watch football during BYU's rain delay plus the whole BYU game) and a blood gas, the floor was acceptable.  And so up we went.

By then, it was just after midnight and the boys were exhausted!  So they crashed on my bed.  Andrew had actually fallen asleep in the chair in the emergency department, and he really didn't wake up walking to the car later.  I kinda wonder if he'll even remember being in the room.

By the time we finished going over his history and meds and what-all, it was about 2:30 a.m.  I fell asleep quickly, but realized shortly after that I was hearing voices, several voices, and something didn't seem quite right about it.  As I fought to come to consciousness, I realized there were several people in the room.  It was about 3:30 a.m. and they were bagging him and then trying to go back on the vent.  And he was now at 12 liters and struggling with 80's for his sats.  Without the bagging and 12 liters, he was in the mid-70's. Plus, the fever he'd started at 38.6 (101.5) had gone up to 39.7 (103.5) and his heart rate was way up, too.

Yeah, that one earned him a quick trip downstairs, really pretty quick, and with a full entourage.  I'm not even sure who all was there, but I know the attending, his nurse, I think the charge nurse, and at least two RTs were involved.  Plus, by then it was 15 liters of oxygen.  Even the trip in the elevator, one floor down, was a bit dicey.  I don't even want to think about if we hadn't come in earlier.

This morning, he's sleeping fairly peacefully.  He's on the PICU ventilator because it let's us give him more oxygen.  He was on 100% O2 but has weaned down to about 70% now.  His fever has broken, for now, and we're not seeing as much junk from his nose and trach.  But he's not out of the woods.  What initially looked like maybe we'd be watching for a day or so may now be a much longer process.

PLEASE, if you are sick, even if it's not "that bad," PLEASE don't spread your germs.  PLEASE, stay home.  There are those who say, "but it will strengthen the immune system to be exposed."  Yeah, so let's all get together and have a smallpox party.  It's well-known that those who survived smallpox never got it again, but there was the small detail of survival.  And those "simple bugs" can be just as deadly to someone who is already struggling, with cancer, with an auto-immune disorder, or with a fragile system for any reason.

As we transfered to the PICU, it took a few minutes for the staff to gather everything needed to make the trip safely. I took a moment and updated the facebook pages.  I cannot tell you how much it meant to me to see all the prayers for him that poured in from around the world, mostly from other moms who understand how this one plays out.  It is so comforting to know that the power of Heaven is being called down for our little man.  It buoys up the spirit and lifts the heart.

Hear my prayer, O God; give ear to the words of my mouth.

Wednesday, September 4, 2013

First Day of School

Aaron's first day of school was yesterday, and boy, he was excited!  He was so excited to go that he woke up chattering at 4:00 a.m.  Um, yeah, school doesn't start quite that early.

Needing a haircut!
The day before was the "get ready" day.  Because his PICC line was gone (yea!) he could have a bath. He also needed a haircut!

Like most of his brothers, it wasn't on his list of favorite activities.  He did okay with the haircut, but then to have a bath too was just adding insult to injury.  We did that as fast as possible and he just sobbed.  Poor kiddo.
Getting all wrapped up.
Hey, that buzzing thing is kinda strange.


Are we almost done, please?

Hair is done, nap time now?

Then there was the matter of shoes.  See, even with his foot surgery almost two years ago, his feet are kinda different shaped.  They still curve out a little and they are WIDE.  I call them his Flintstone feet.   Yep, not going to be finding shoes that fit him.  But I wanted him to have shoes for school.  He's never really had any that fit him, so he's always just had socks on.  Daddy to the rescue.  He whipped up a pair of very cute moccasins Monday afternoon for Aaron to be able to wear to school on Tuesday.  Can you believe how adorable these are?

Then the big day arrived.  The smiles that we got yesterday, and again today, when it was time for the bus.  He was sooooo thrilled!  Me, well, not quite so much.  Oh, I was very happy for him, and I felt like he was in good hands and would be well taken care of.  But this was hard!  The last time I remember it being hard like this was 17 years ago, again the day after Labor Day, when his oldest sister started Kindergarten.  Same kind of story.  She was excited and thrilled and couldn't wait to get started. I wasn't so sure I was ready to let go.

But I did then, and I did again yesterday.  It was weird, so very weird to not have the noises of his machines.  And I would start to take a break from working to go check on him, and remember that he wasn't here.  It's a good thing I had several errands to run, a kitchen sink to fix, and a truckload of work from the office yesterday.  This being without him every morning is going to take some getting used to.

But as I figured, he had a wonderful time at school.  His nurse has reported back that he like the words and such, but he LOVES pictures and people and the sensory room there.  That's my little man.  And I think we'll be bringing back the afternoon naps now...

Education is not preparation for life; education is life itself.  
~John Dewey