Friday, August 29, 2014

He Did It!

Aaron did it.  He finally did it!  He caught a cold and We. Stayed. Home!!

Disclaimer here:  from what I felt after he gave it to me, and the siblings felt who gave it to him, it was a pretty minor, mild cold.  But hey!  I'll take it.

Last Saturday his eyes were pretty teary.  No, he wasn't crying, but they were a bit red and swollen and runny.  (Okay, that sounds weird.)  Sunday was a bit more, plus I started suctioning him and he was needing a little more oxygen.  Oh, and our nurse was out sick that night.  So Aaron and I got to "play" during the night.  That means, I tried to make the room as dark as possible so I could sleep on the floor, and he worked really hard on finding as many rattle toys as he could in his bed to keep me awake.  Whatever.

By Sunday night, it was obvious that he wasn't going to be making it to school on Tuesday for his first day.  Monday, I attended the funeral for a friend's sweet eight month old.  Precious Ryder was born with a heart condition.  In his short life, he had three open heart surgeries and was listed for transplant a month before he passed away.  Aaron had to go with me because he was sick enough that I wasn't leaving him with anyone.  And yeah, we ended up spending the service in the hallway because he needed help.

Tuesday was about the same, maybe a little worse. I think we hit the peak probably Tuesday.  By yesterday (Thursday) he was doing really well, and today, Friday, he'll finally get on that big yellow school bus and start his new school year.

So what did it take to keep him home?  We did lots of albuterol, lots of CPT (chest physio therapy, also known as beating on the baby, or in his mind, spa treatments.  Yeah, he really does love it, really!).  Combined those with much more oxygen than normal, and somewhere each day, bagging him between one and three times to force his lungs open a little more each.  And of course, lots and lots and LOTS of suctioning.

But he did it.  He beat this one.  I'm just hoping that this business of missing the first day of school doesn't become a pattern.  But if it does, oh well.  That means he's still here, still with us.  And I'll take that.

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

Tuesday, August 19, 2014

Trach Plug (Ug!), First Day of School, and a Beautiful Moon

First of all, big shout out for the first day of school!  Everyone got up (almost on their own!) got ready and got out the door on time.  And Mama actually got real "first day of school" pictures of everyone.  Most years recently, someone's had their picture taken after school, or on the second or even third day.  We call those "first week of school" pictures.  Hey, it happens.

Notice how Aaron's taking all this in stride, or dream!  He doesn't actually start 'til next week, and he's enjoying a really nice lie-in today.  In fact, it's after 10:00 and he's still sleeping peacefully.  Kid better get it in while he can.  Next week the bus comes and he'll be back in school with the rest.  A week after that, and Deborah starts at BYU.  Kinda crazy.

Now yesterday, though...  Ever had one of those experiences that you hope NEVER happens again?  Yeah, this was one of those.  Matthew and I got home from getting his driver's license (yea! another driver to help out) and as we came in, William was calling me into Aaron's room.  He was breathing funny.  His numbers all looked good, and his color did, too, but he was pretty noisy.

I started looking at things, listening to his lungs.  Aaron has the ability to push air up past his trach and out through his nose and mouth (like us!) and that sometimes causes a kinda whistling noise.  But you check that out by listening to his lungs and then to his cheeks.  If it's louder in his mouth, blame it on the leak.  If it sounds louder in his lungs, look further.  This time it was his lungs.  He sounded asthmatic, but didn't look like it overall.  But we've got that ol' Albuterol (all-better-all) so I figured, why not?

Now, he doesn't always respond immediately, but he doesn't get worse.  This time he started to struggle, he also got upset, looked scared.  So even though I couldn't hear any "junk" in the lungs, I tried to suction him.  This involves inserting the suction tubing to the right depth, depressing a plunger to start the vacuuming, and pulling it back out with the nasties.

It really is pretty simple, and no biggie at all.  In fact, when he's sick, he might need it done as often as every 15 to 30 minutes.  It's kinda like blowing your nose.

Except yesterday, that's not what happened.  I went to suction him and the catheter only went partway in before it stopped.  I knew exactly what it was, although I tried to deny it for a second.  He had a plug.  And yeah, it's exactly what it sounds like.  A plug in your sink keeps the water in, blocks it up.  A plug in the trach doesn't let the air pass.  Not in, not out.  Pretty scary for him and for me.

I flew into gear, grabbed a trach tie, grabbed the spare trach, yelled to Andrew (who was in the room) to crank the oxygen all the way to the top.  I pulled the old one out, threw the new one in.  I'm afraid we didn't take the time to use all the nice lubricant on it and his stoma that makes insertion so easy most of the time.

And yeah, there it was.  A nasty, hard plug coating the inside of his trach, almost completely blocking it of.  Only about a pinhole opening in there.

I put in a call to our trach ninja, and apparently, the fact that the new meds are working, they're opening up his lungs, is a double-edged sword.  As they open up more, he'll start moving more of the junk that we've never seen.  And it's got to go somewhere.  So plugging is more likely than not.  So now that trach that sits bedside, and the ties that are in the drawer in a package have been moved.   They're hanging taped to his mobile, and the ties are already on the trach.

He's doing great this morning, really, really great.  We're prepared if he gets another plug.  But oh, I can't tell you how much I hope this is behind us.  In the almost four years since he got his trach, he's never had one.  And they're scary, dangerous.  And a very, very real threat to anyone with a trach.  I know several moms who've lost their children to a plugged trach.

So yeah, while he's doing amazing today, we're still on high alert for any more plugs.  And like I said, I'd be more than okay if this never, NEVER happened again.

Last week, as I was coming home from visiting a friend, the "supermoon" was rising over the mountain.  I wish the picture could do it justice.  Can I say, I love living here in the shadow of these mountains.  It rose just perfectly between two peaks, and the reflection in the wispy clouds is beautiful.  So enjoy the picture.  I wish I could say I used some amazing technique to get it, but I'm not that good.  Aren't we fortunate that God is an amazingly beautiful artist?

"The moon is at her full, and riding high,
Floods the calm fields with light.
The airs that hover in the summer sky
Are all asleep tonight."
-William C. Bryant

Monday, August 18, 2014

Poor Baby, Mama's a Little Distracted

Oops, big oops.  The other day I needed to take Joseph up to a referee clinic.  William and the others were out so Aaron was going along.  I switched him over to his travel vent and oxygen tank.  I do definitely remember cracking open the tank.  I know that happened.

As I picked him up to take him to the car, he sounded pretty junky, in fact, really junky.  But we were running late and I figured I'd give him 'til we got out to the car and if he still sounded bad, I'd suction him then.  (It's probably only 50 feet or so.)  We also don't have him on the pulse/ox during the time we're moving him 'cause I simply can't carry him, his ventilator, roll the oxygen tank and carry the pulse/ox.

We get out to the car, I set him down, I set down the ventilator.  I turn the vent around so that the numbers can be read while we're driving, and uh oh.  It's dark.  Yeah, it's not on.  Nothing happening.  Brilliant mom switched him and didn't turn the stupid machine on!

Sorry, sorry, sorry!  I get it turned on, put him in his seat and buckle him.  Then I start wondering, if I didn't turn it on (I've never forgotten that before), did I turn on the oxygen tank?  I know I cracked it open with the wrench, but did I dial it on with the knob?  Um, nope, I didn't.

Poor kid.  And I don't know where he's at right now, 'cause remember, we don't carry him with the pulse/ox and I'm just getting it plugged back into him.  But he was still smiling and laughing at me, so I don't think he was scared.

About that time, Joseph came out and got in the car.  "Mom, he's only at 83 and it's a good wave pattern."  Yeah, that would be because he's trying to play catch-up after mom screwed up.  I'm so grateful for a happy little guy who forgives his mom for messing up.  And I'm back to paying more attention to what I'm doing.

As long as the world is turning and spinning, 
we're gonna be dizzy and we're gonna make mistakes. 
~Mel Brooks

P.S.  I actually got this written yesterday, Sunday evening.  Monday morning we had some "fun" the likes of which if we never do again it will be too soon.  Stay tuned and I hope to get it onto the computer and out of my brain tomorrow.  

Sunday, August 17, 2014

The Insanity Begins (or Continues?)

Leaving the ER last Monday night.
Oh, the last lazy days of summer.  The almost non-existent alarms, late nights, no rush to go anywhere days.  And they've been enhanced the past week and half by two boys recovering from having their tonsils out.  So even more laziness abounds.

Even Aaron has gotten into the act.  Last night he "napped" from about 12:30 to 2:00.  Yes, a.m.  But he has been awake most of the day, so maybe he'll get his days and nights straightened out.  A mama can hope, right?

That's all about to change, and it's going to be painful.  Bright and early (or at least early) Tuesday morning, alarms will blare, we'll rub bleary eyes, and stumble upstairs.  At least I hope it goes that way.  School starts, soccer starts, piano will start shortly, and the whirlwind begins.  But it will be good to get some rhythm and routine back.

Aaron doesn't actually start for another week.  So he'll get to hang out at home with mama while we work on getting our stride back.  Which is probably good.  He's been having his own version of "fun" lately.  We've had to rescue him several times (meaning twice a day, then not the next day, then twice the third day, and so on) for the past couple of weeks.

And a week ago, early on Monday morning, he started in with another asthma attack while still sleeping. Not good.  So given that there were signs of cardio involvement, too, I threw in the towel and took him up to Primary's on Monday afternoon.  The good new is his heart looks great!  The even better news is, that after spending over six hours in the ER, we came HOME!  We ran tests, came up with a plan, and because he was stable, came home.  That doesn't happen very often.

One of the tests was to measure a protein the brain puts out to help the heart work.  Under 100 is considered normal.  Aaron usually hangs out in the 130's to 160's as a matter of course.  100-300 means the heart is working harder.  Above 300 is mild heart failure and so on.  This time, Aaron was at 87.  Yeah, actually down in the real normal range, not just his normal.  Let me tell you, that was reassuring.

On Wednesday, we were back up there for a clinic visit with the pulmonologist.  Frankly, having to rescue him so many times just isn't good.  At some point, it's not going to work.  So now, we've got two more meds (because we didn't have enough already, obviously).  One is a short-term oral steroid that he's finish using tomorrow.  The other one will work on his asthma from a systemic approach and he gets it through his g-tube.

So now we're up to two heart medications, four asthma medications (one taken only when needed as a rescue med), thyroid medication, reflux medication, vitamin, and fluoride, plus a probiotic and coconut oil.  And most are taken more than once a day.    Planning outings can really get interesting.  One of the good things about his school schedule is that the only time he eats at school, he has no medications scheduled.

Like I said, the insanity continues.  But it's all good.  It keeps us on our toes.

Your choices of action may be limited, but your choices of thought are not. ~Abraham–Hicks

Friday, August 8, 2014

My Silly Boy

Never a dull moment around here with Aaron (or with the others, for that matter).  Yesterday was no exception. Last night I sent out a shout-out, mostly 'cause I was trying to avoid a trip to his "vacation home."

Here's what it said:  Troubleshoot with me please: Low sats, higher O2 needs. Great heart rate and respirations, and he's happy as I'll get out. Asthma always causes higher heart rate and resps, like really high, so I don't think it's that. No fever. No other symptoms. But just had to bag him out of the low 80's and he's using about twice as much O2. VSD, ASD's, pulmonary hypertension, trached, vent and O2 dependent. HELP??
 Translation:  He looked good, really good as far as his heart rate and breathing went.  Really happy, too.  But his oxygen saturation rate was down and his oxygen needs were up. When he has asthma issues, because he's working harder to breathe, his heart rate and breathing increases, too.  

But those numbers were beautiful!  He had no fever and nothing coming from his trach or nose.  And his lungs sounded good.  But I'd already had to "bag" him, or help him breathe with a bag that attaches to the trach and forces 100% oxygen in and when he was done with that, he was on two to three times as much oxygen as usual.  And then the alphabet soup that follows at the end is a list of his heart defects, a hole between his lower chambers, a few in his upper chambers, and his crazy high lung pressures.

First suggestion was to call cardiology.  Kinda what I figured, but didn't want to admit it yet.  So I bit the bullet and did so.  The cardio fellow suggested albuterol even though he was asymptomatic, and watching for an hour or so.  She did warn me that if he remained unstable to bring him right in.  But if he was okay on the higher amounts, to watch and see if I could wean him down slowly.

So albuterol, with a slightly higher heart rate and respirations.  Then a (short) nap, followed by a really smelly diaper. And the whole time, he's maintaining high sats, like back up in the mid 90's, where he belongs.  And we're turning him down every 15 minutes or so.

By the time she called back, he was looking great, with sats of 94 on 2.5 liters of oxygen, right where he should be.  So what was it? Was it some asthma?  Was it the forthcoming diaper?  Was he overtired?  Maybe.  Who knows?  

Or it may simply have been the weather.  I recently spoke with a friend who has some significant cardiac challenges and she told me that the changes in air pressure also cause changes in her body, in the blood vessels themselves. I never thought about it, but it makes sense.  I mean, it changes the pressure in my lotions, for Pete's sake.  And we all know that Aaron's pulmonary pressures (pressures in the blood vessels between his heart and lungs) are sensitive to just about everything, and they're already way too high.  

Whatever.  Anyway, the good news is that we stayed home, we're STILL home, and he's still looking great.  Just another day in our journey.  And a good one at that.

Life: It is about the gift not the package it comes in. 
~Dennis P. Costea, Jr.

Monday, August 4, 2014

Man About Town

Hanging out at one of Mama's appointments.
The past couple of weeks have seen Aaron really on the go.  Or at least it seems like it.  And he's enjoyed being out and about, a lot!  This kid loves to get out and see things, new things, old things, whatever!  He just likes to go!

But it's harder than I'd like it to be.  See, he's attached to a big oxygen tank, his ventilator (I don't think holding his breath for an outing would work real well) and his pulse/ox machine that measures his heart rate and oxygen saturations.  Plus, we always have his suction machine close by along with his "go bag" for those "just in case" times, which do seem to come up fairly frequently.

And because we don't have a handicapped van, we have to load and unload all of that equipment, plus him, in and out of the car and onto his wheelchair at every stop.

So the long and short is, Aaron goes fun places, soccer games, ballroom concerts, and so on.  But not so much to the places a lot of toddlers find themselves, the store, doctor's appointments for other people, and so on.  We just don't run errands with him that much.

But a couple weeks ago, I was out with him and near Target, where I really needed to pick up some things.  I waffled, a LOT.  But finally decided to just bite the bullet and try things.  And it worked pretty good!  I put a blanket down in the basket (he still can't sit well on his own), put the oxygen tank next to him, the vent and pulse/ox in the front of the basket and hung the go bag on the handle.  He'd been doing well without suction, so I risked leaving that in the car, knowing I could make a mad dash, or describe it well enough to someone they could grab it if it became truly necessary.

Do you have any idea how freeing this was?  Now, I'm not for a minute thinking taking small kids shopping is the dream of a lifetime.  I get it.  I've DONE it, more times than I ever wanted.  But to not be able to, to not even have the choice, and then to finally figure it out, well, it's been a couple weeks and it still makes me smile.

He's also been to soccer games ...

And to the water park at Seven Peaks.  He and I hung out on a blanket and he had a grand ol' time people watching. 


Then after a little while, he got tired and tried hiding from the sun.

In fact, he ended up hiding so well, that he fell asleep.  Funny little boy.  

But the highlight of the past two weeks was Michael's baptism on Saturday.  What a blessing it was to have him there.  It's kinda funny that with six kids there, I felt like it was a small family group.  Missing the other three made a big difference, but I wouldn't have them anywhere else.  

In fact, a funny story about Michael almost two years ago.  We'd been joking about how he fit in David's and Mary's suitcases, and could just stow away and go with them on their mission.  But at six years old, he didn't realize we were joking, and he was fully intending to go with David as his companion.  And he was devastated when he found he couldn't go.  The first reason I gave him fizzled fast.  I told him he couldn't go because he had to stay here so he could be baptized.  He looked at me like that was the dumbest reason I could come up with (maybe it was!).  And said slowly, like he was educating someone much less intelligent than he was, "Mom, they baptize people on missions."  Oops.  
But it was a very sweet, special day.  And I think my favorite picture is the one I got of Michael and Aaron, when Michael is still dressed in white.  I love the bond between these two.

We'll be Friends Forever, won't we, Pooh?' asked Piglet.
Even longer,' Pooh answered.” 
A. A. Milne