Friday, March 28, 2014

Music to My Ears (and My Heart)

Check this kid out!  This is what I've been listening to for about the past hour!  Can I tell you how happy this makes me??

We lost so much ground last April (yeah, almost a full year ago) when Aaron got sick.  He had been doing so well trialing off his ventilator.  But after that bout in the hospital where his asthma flared up, we just kept struggling.  And while he'd been spending hours every day off the vent before, he wasn't even stable ON the ventilator anymore.

If I'd had time to contemplate it, it would have broke my heart.  But instead, I was working so hard on keeping him alive, that I was just grateful that he was still here, and hoped he'd stick around.  It did make me so sad one day when Andrew came up and asked me to put the speaking valve on so he could hear Aaron's voice.  I almost cried as I told him that wasn't possible.  We couldn't even take him off the vent, let alone put that on.

A speaking valve works because there is a one-way membrane. A person breathes in through it, but then it seals and they have to push the air up and out through the mouth and nose, passing the vocal cords on the way.  You know how they tell you that if someone is making noise, they're not choking all the way yet? It's because they're moving air past their vocal cords and out through the mouth.

But given how well he's doing on his new vent settings, you know, the ones where it's supporting the air pressure but making him do all the work of breathing, I thought maybe, just maybe, he might tolerate being off for a little bit.

So on Wednesday, we tried for 30 minutes.  At the end, his heart rate was up a tiny bit, his sats were great, but his breathing rate was up quite a bit.  Time to call it.

Thursday, we tried again.  This time he made it a full hour!  And all his vitals stayed within normal limits.  The last 15 minutes or so, he was working harder to breathe, but his heart rate and breathing rate were still within normal limits.

Today, I thought I'd do something really crazy, and see if perhaps he might let me put his speaking valve on him.  When we very first started using it just over a year ago, he really struggled with it.  Remember, he's been breathing out through his neck for almost 3 1/2 years now.  But he kind of pulled a few funny faces, and then discovered that he could make noise!!  It's now been almost an hour and a half.  He's having a blast in there!

And those vital signs?  They've rarely looked better, and on only one liter of oxygen, too.  Yeah, music to my heart.

He who sings scares away his woes.  ~Cervantes

Wednesday, March 26, 2014

Murphy's Job: To Keep You Humble

Well, we have a power outage, so since I can’t use the internet, it seems like a good time to write down what’s been happening. 

Last week, Aaron managed to catch the tummy bug the rest of us had.  He had a little more trouble with his feedings, but not too bad.  His struggle was on the other end.  Or maybe I should say, MY struggle.  Yeah, we were changing bedding at almost every diaper change.  And those were pretty darn often. 

As an example of how out of it I was, it took me two full days before I got smart enough to just put a Chux pad underneath him, on top of his sheets.   (Those are those great disposable absorbent pads hospitals use.)  But since Aaron has lots of extra calories to spare, as long as he wasn’t dehydrated, everything was good.  So he slept a lot (and pooped a lot!) and everything was good.  And come Sunday morning, he was just fine!  So that’s all good.

Sunday evening though, that was a whole different kettle of fish.  You know how you get nice and comfortable?  Everything just fine and you’ve got this stuff down?  And then good ol’ Murphy comes along and smacks you just to keep you humble!   Yeah, that pretty much sums it up.

I (sorta) change his trach every two weeks.  That means occasionally I change it weekly.  Sometimes it gets pushed to every three weeks.  I think we were pushing almost four this time.  So I had time Sunday evening and figured I’d just get it done.  I mean, after all, I’ve done it probably close to 200 times now.  And last time?  Well, he laughed at us as we did it.

This time, he was asleep and just sort of waking up.  Sometimes that’s good.  He’s nice and relaxed.  This wasn’t one of those times, I guess.  Anyway, got it changed out, pretty routine except he wasn’t real happy about it.  His nurse had just gotten here, and she noticed he was pretty red right below his trach site, on his upper chest, and asked if he had a rash.  In running my hand over it to see if it was warm, I also noticed a lump, about the size of a blueberry, just below and off to the right side of where his stoma is.  Um, what??

I grabbed the stethoscope and tried to listen.  Good breath sounds on the right, not so much on the left.  In fact, almost NO breath sounds on the left.  Quickly undid his ties, removed the trach and replaced it.  This time it was MUCH harder to get the trach in.  Poor baby.  Still have the lump, but now I’ve got equal breath sounds on both sides.  And by the way, what’s he thinking of all this?  Well, let’s just say he’s much less than impressed.  So his sats are dropping, too. 

We turn him up and Daddy comes in to hold him and help him recover.  After all is said and done, he does calm down, goes back to sleep and is at his baseline for the rest of the night.  And I’m left trying to figure out what the heck has happened. 

Michael getting ready to go back to the OR.
He's really doing pretty good today, only
24 hours post-op.
I called our trach ninja the next morning and she was stumped, too.  She suggested we needed to run it past Dr. M.  Bonus, he was scheduled to take out Michael’s tonsils in the morning!  

So yesterday, I talked to him.  He thinks the lump may be a small cyst and he’ll take a look at it when we go in for an ear check in two weeks.  And he suggested that what happened with the lack of breath sounds is that in changing the trach, I may have dislodged a plug that then lodged in the airway.  Removing and replacing it again, probably loosened it again.  We did get a lot of “junk” out after it was all over. 

Anyway, the long and short of it is, he had a rough time.  And it seems the only time trach changes are hard is when I’m feeling pretty confident that it’s going to be easy peasy.  SOMEDAY, maybe I’ll stop thinking that way and he won’t have to suffer.  Maybe. 

But now, he’s doing great again.  We’re even thinking of starting to trial off the vent a little bit.  Actually did for about 30 minutes today.   Who knows? Maybe someday he won’t need that crazy, obnoxious, wonderful, life-saving technology.    But either way, I’m still loving his snuggles, his gentle spirit, his wonderful ways. 

Oh, and the power?  Rocky Mountain said it would be out for about five hours.  I think they overestimated by a bit.  It came on just after I started writing this.

A bend in the road is not the end of the road... 
unless you fail to make the turn.  
~Helen Keller

Monday, March 17, 2014

National Amateur DanceSport Championships

Here I am, rolling in and ready to
enjoy the sights and sounds!
Hi Everyone!  Guess what?  Mom couldn't get a nurse for me last Thursday, so I got to play hooky and go hang out with her and the big kids at BYU.

I spent hours just gazing
down at all the beautiful
dancers.  Loved it!

And since I LOVE music, it was a blast!  It was so exciting and I loved (almost) every minute of it.  (It got a little harder as I got more tired, but that's pretty much it for the down side.)

Finally, I was wiped out, so Mom
put my on my blanket and I fell
asleep for a few hours.  

When I woke up, there was a swing competition going, and I figured why not?  I might as well get in on it, too.  Too bad that getting called back depends on where you are as much as what you're doing.  I guess the judges just couldn't see me way up high, 'cause otherwise, I KNOW they would have wanted to see me again.  I mean, how can you resist this kind of enthusiasm and rhythm?

Anyway, here are few of the pictures Mom and David took.  You might think there's actually a lot, but really, I think they took almost 500!  Yeah, a little camera happy here.  Be glad I talked Mom into narrowing them down a little.  

Jonathan and Deborah both had individual competitions that they did really well in.
Jonathan and Chloe


So what do you do when your partner
gets sick before the beginning of your
last competition?  You find someone
else who's not competing, introduce
yourself, and go have fun!  Even though
they'd NEVER danced together before
Jonathan and Rachel made it through
a few rounds of callbacks.  Nice!

Deborah dancing Gold Bar Paso Doble
Jonathan and Chloe

Deborah dancing Gold Bar Hustle
Gold Bar Paso Doble again

Lone Peak High School did well, also.  Jonathan and Chloe got some of the highest marks awarded for their Cha-cha in the Team Match, and the team took third in their division.

I think my favorite was watching Jonathan and Deborah compete together.  Deborah's friend, Brayden, dances, too.  He and his smooth partner even placed in their event.  Isn't her dress beautiful (the purple one)?  She's an artist and designed the pattern on it.  

Jonathan is wearing the Latin shirt I made for him.

Last picture together for competition.
Jonathan will be leaving on his
mission and Deborah will be
finding a new partner now.

Isn't this gorgeous?  

There were other fun things, too.  Like these two little kids, probably my age!  They came out on the floor, and then looked around with these huge eyes at all the people!  The stands were pretty full at the time, and it must have looked scary!  Mom actually wondered if they were going to run right back off.  But the music started and they looked at each other like, okay, we know what to do now.  And they just did it!  Plus, they got called back!  Awesome!!

BYU Dance 180 is the first social dance class.  There were almost 100 couples on the floor (but just for a minute).  Ever wonder what 100 couples dancing looks like?  Well, here it is.  Good thing they split them up into different heats for the judging, huh?

And finally, here are just a couple of fun, pretty pictures, 'cause I liked the swirling dresses and bright colors so much.  Really, I think I might want to do this again next year.  Wonder if I can pull it off again.

 Dancing is like dreaming with your feet!  ~Constanze

Wednesday, March 12, 2014


I'm afraid I've kinda been out of the loop lately, but I have a good excuse, or reason, or whatever.

Life has been crazy (when hasn't it been?) plus, my body decided it was "done."  As in, "not happy," "rebelling," "taking a time-out."  Yeah, in the midst of insanity, I had to step back, sit down, and curl up on the couch for a few days.  See, usually, the kids bring home the tummy bug.  This time, I got the jump on them, and right before our big announcement for the week (like 15 minutes before).

And our big news?  (Drumroll, please...)
This kid, Jonathan, got his mission call.  Yeah, a really big deal.  He planned to open it at 8 p.m. on Wednesday so his sister had time to come out for it.  Although we teased him about steaming it open and then resealing it, it stayed safely on the mantle until the time came.

And where's he going?  Argentina Posadas, speaking Spanish and teaching people about Jesus Christ for the next two years.  All of a sudden, Argentina seems much farther away than Vancouver, British Columbia or Portland, Oregon.  I think the Lord knew He needed to break me in gently.

But Spanish??  Yea!!!  Finally someone who will love the language like I do.  However, getting a Visa for Argentina can take some time, so we're already getting busy on documents.  See, in addition to the passport, we have to get a certified birth certificate, along with a special stamp, that's been issued within the last five years.  No biggie for most.  But Jonathan was born on the East Coast, and that's a bit of a drive from here.  So we're having to do it all through mail.  Fun.

In other news, this morning David was officially released from medical care (although not therapy) and given a return date for his mission by the doctor.  He's worked hard and is going to make his goal for April 7th.  We'll miss him around here, especially Michael.  I don't think there have been as many board games played in the last year as they've played since surgery.  But he's a bit bored and anxious to get back to work.

And Aaron, how's he doing?  Just fine, thank you.  As William's grandpa used to say, "as fine as frog's hair."  (And in case you haven't checked lately, that's pretty fine.)  Turns out that his vent settings weren't exactly what the pulmo had envisioned (although he did make the changes himself).  He was doing pretty good on them, but when we got the right ones, it was even better!  He's breathing even easier and more comfortably than before!

Quick mini-lesson:  most people probably understand that a ventilator ventilates you, or breathes for you.  And for over three years, that's exactly what it's done.  It's pushed air in, and then relaxed as he breathes out.  But the whole time, it keeps pressure up so that his lungs stay inflated.  Almost like a sponge that's full of water vs one that's completely dry.  The new settings don't do that.  They just keep up his pressures.  He has an IPAP, or inspiratory pressure setting, where when he initiates a breath, it puts a little more force behind it, and and EPAP, or expiratory pressure setting, which keeps his lungs open, like the wrung out sponge vs the completely dry one.  And yeah, he's liking it, a whole lot!!

And tomorrow he's playing hooky!  See, it's Ballroom Nationals time.  It's the time that I get to be "mom" to my older kids.  It's "our" time.  But there wasn't a nurse available for tomorrow afternoon, so he's coming along with.  Given that he loves music and moving, I'm thinking he's going to really enjoy it.  So look for updates from Aaron about what it's like in the dance world.

In the midst of all of this, there have been some challenging times, too.  A precious little one with Trisomy 18 grew her angel wings this week.  Little Delilah only two years younger than Aaron.  She had already passed that magic "one year" mark.  Somehow, these always catch me by surprise, and cause me to hold on just a bit tighter to him.  Also, a friend up in Salt Lake lost her husband.  She has twins about a year younger than Aaron with their own special challenges. My heart breaks for both of these moms.  They are strong, but sometimes, the pain is stronger.  Please lift them up in prayer.

In other news, HB105 is still moving forward.  It passed the House and went to the Senate where it underwent some revisions to narrow the focus a little.  After that, it passed the Senate unanimously.  It's now back in the House so the updated version can be voted on, but it's expected to pass and that the govenor will sign it.  IF all goes well, these children who need an alternative so badly may be able to get it by October.

I've heard some question why parents are letting a little thing like the law get in the way of a life-saving treatment for a child.  Well, if you flew under the radar, if you only saw a doctor every one, five or ten years, that might be possible.  These kids, they have specialists that number into the teens.  (Aaron doesn't have seizures and he has ten.)  Plus there are the ER docs, the attendings and residents on the floor, plus two nurses every 24 hours, plus, plus, plus....  And every single one of them has access AND responsibility to know what all is being used to treat and why.  Yeah, hard to get under that radar, right?

So a big shout-out to the parents who have fought so hard to help their children AND stay law-abiding citizens.  And a big thank-you to the Utah Legislature for recognizing that when it comes to our children, we are the experts.

“Luck, to me, is . . . hard work 
and realizing what is opportunity and what isn’t.” 
-Lucille Ball 

Wednesday, March 5, 2014

Trisomy Siblings

Because I pray for all of my children,
not just Aaron.
March is Trisomy Awareness Month.  You know, the third month, tri-, all that stuff?  Anyway, thought I'd tell you a little bit about Aaron's siblings.

There are those that might think that Aaron's challenges rule the world around here.  And sometimes, occasionally, they are in the forefront.  But that also usually means there's sirens in the air and an ambulance pulling up. 

So what does a trisomy sibling do at our house?

Well they build cars for a Pinewood Derby (complete with the local high school colors!).

 They excel in academics 
Jonathan is Lone Peak's Math Sterling Scholar
Andrew at the district science fair.

They participate in soccer, plays and baseball.

They sing.

They go to school.

They serve missions.

They dance.

They goof off.

Yes, Michael is wearing David's LEG brace
on his WAIST.

They play.

Yeah, they may know a little (okay, a LOT) more medical terms than most grown-ups.  They know how and when to adjust oxygen.  They know how to tell if he's being silly or needs some help.  And as someone point out on Sunday evening, our dinnertime conversation may be peppered with talk that could cause indigestion for tender tummies.  (Stomas, trachs and snot anyone? Sorry.)

But most of all, they're kids, siblings, complete with all the goofiness, rivalry and messy rooms that come with growing up.  Yeah, most of all, they're more LIKE other kids than DIFFERENT.  And frankly, so is Aaron. 

I brought children into this dark world 
because it needed the light that only a child can bring. 
~Liz Armbruster