Hallelujah -- Praise Ye The Lord

Tonight I was blessed to be part of a community Christmas choir.  The theme was Hallelujah, which is translated as "Praise ye the Lord." 

So wonderful to be reminded, to rejoice.  Aaron is home, but it's been harder on all of us this fall.  He's been hospitalized four times in five months, plus a surgery.  My right elbow has decided it's just not happy, and I'm learning to type one-handed.  

Like I said, it's been hard. 

But tonight, tonight was everything my heart needed.

Songs of rejoicing, prayer, praise.  What a blessing to be able to sing.  As we sang the Hallelujah Chorus from Handel's Messiah, I was so deeply touched.  I almost couldn't sing, but instead, reached down deep inside and tried to let all the emotion come out through my voice.  

"King of Kings, Lord of Lords."  "And He shall reign forever and ever, forever and ever, forever and ever."  What a testimony, what a blessing this knowledge is.  He is my King, my Lord, my God, my Friend.  

And I will praise Him forever.

Hallelujah.

Run Away, Run Away!

Yea!!  We're running away, as fast as we can.  Which actually, is kinda slow.  But whatever.

Yesterday he spent the day on three liters of oxygen all day.  This morning we had to turn him to two.

The thought is (currently, you know, it changes) that surgery so soon after his pneumonia really hit him hard.  While it was a "simple" surgery, the dry air from the anesthesia really can kick up asthma, and the stress can increase his pulmonary hypertension.  Together, it was a winning combination.

And the prize?  Another week in the hospital.  Kinda a long "same day surgery."

But he's looking really good.  We'll go home with yet another med to add to his regimine.  It's an inhaled antibiotic that we'll use for 28 day and then take 28 days off.  Then cycle it back on again.  'Cause you know, we don't have enough meds yet.

But that's okay.  We'll throw it into the mix and it will be part of our new normal.  And if it can keep us out of the hospital, so much the better.  We've been here way too much lately.  This kiddo needs a break.

Freedom is nothing else but a chance to be better.... 

~Albert Camus

Lead, Kindly Light

This one has been a hard one.

Usually when Aaron is admitted, we have a fairly clear path now.  We come in, get a usually familiar diagnosis, and we know the path it's going to take.

This time is different.  We don't know.  Not knowing is hard.

And it's a "bounce back."  Those are emotionally much harder than a "regular" admit.  Harder on me, harder on the rest of the family, too.  I've been home a few times due to concerts and my own doctor's appointment.  (I'm having to learn to type this left-handed, fun times.)

And the questions:  "When is Aaron coming home?"  "I don't know."  "Can't you stay?"  "No, he's all alone up there.  I need to go back."  And it's heartbreaking.  I need to be there.  I need to be here.

As I was coming back up last night after the Ballroom concert, I flipped on a CD.  The first song was "Lead, Kindly Light" by BYU's Vocal Point.

I was driving west on the road to get to the freeway.  It was dark.  There weren't many cars on the road there and few if any street lights.  And the line, "The night is dark, and I am far from home...." came on.  And it hit me right there.  It was dark.  I was moving farther away with every mile. And I don't know what's happening, not really.

Aaron is still a puzzle and we're not sure we have all the pieces yet.  No, I don't think this will be our "last admit."  He's getting better, but he's been up here a whole lot more the last few months than he has in a very, very long time.

Over the last few weeks, our Trisomy world has been rocked over and over as little ones, older little ones, have grown their angel wings.

But there still, on the road, there was light, the light from my headlights showing what was immediately in front of me.  And the Savior is my light.  And He leads me on.

He is there.  He does not leave me.  He has not before, and I know He will not now or in the future.  I can't see where exactly the path will take me.  I don't know what's ahead in the short run.  But He does and I trust Him.

And I found comfort and strength, and the ability to continue on.

So long thy pow'r hath blest me, sure it still

Will lead me on

O'er moor and fen, o'er crag and torrent, till

The night is gone.

John Henry Newman

He's a Puzzle

Someone asked me yesterday why we are here.  I said, "I don't know."

Really, I don't.  We're still scratching our heads.

This is what we know.  He's needing a lot of oxygen.  That's about it.

The why?  Well, that's still eluding us.

He tested positive (again!) for rhino.  Except the only ones who seem to be saying that's the cause are those who've either never seen him, or only seen him once.  The doctor here on the floor, his nurses, and I are all thinking that's not it.

See, Aaron has a definite pattern with rhino.  Within 24 hours, his nose starts to run.  Then we start pulling junk out of his trach.  Shortly thereafter, his sats end up in the toilet.  Um, nothing from the nose, and almost nothing from the trach.  And his lungs sound good.

And on admit, his white blood count was pretty elevated with a significant left shift.  In English, that means his body was cranking out infection fighting cells, and also releasing them before they're mature to help in the fight. And his protected trach brush (taking some cells from down in his lungs) is growing out large quantities of bacteria.  Those all point to a bacterial infection, not a virus.

Or it could be because we did surgery while he was still trying to recover.

Then there's the pulmonary hypertension.  Yeah, it makes sense that it's playing into it, but why?

I think it's the bacteria that's growing, but it's also a pretty nasty one.  Infectious Disease has been in and they feel like if that particular bug was causing it, he'd be a whole lot sicker than he is.

So now we're waiting on a few more tests to come back, namely to see if there is an antibiotic we can use to knock out this bacteria, and if he even really truly needs it.

And honestly, what we really need is his oxygen to get under control.  But he can be kinda confusing.  Good thing he's also cute.

“Sometimes the hardest pieces of a puzzle to assemble, 

are the ones missing from the box.” 

― Dixie Waters

Again, Again, AGAIN!

Quite a bit has happened since I last wrote about our little man.

He had a (relatively) quiet week between discharge and surgery.  Sure, he had a few asthma blips, but those also coincided with weather changes.  No biggie.

On Tuesday, he had surgery, same day surgery.  They went in and cleaned out his ears and replaced the tubes.  The good news is that there wasn't a whole lot of gunk down inside his middle ear.  That gives us hope that this surgery really will take care of the problem.  The bad news is that it bled, a LOT.  In fact, 45 minutes into his 20 minute surgery, I got a call from the OR saying that things were going well from a breathing standpoint, but they were having trouble controlling the bleeding.  It was about another 45 minutes before the surgeon came out to talk to me.  Now our challenge is to keep those new tubes from becoming blocked up with blood.  Fun times, right?

Anyway, recovery in post-op went well.  We went to lunch with the Rainbow Kids team, and headed on home.  But about three-quarters of the way home, he decided he hadn't seen enough of the hospital, we'd shorted him somehow.  He needed more oxygen.  And some more.  And after we got home, even more.

I even tried changing up some of his vent settings at home to see if I could buy him some more wiggle room.  I didn't really notice a difference.  We managed to stay home Tuesday night, and on Wednesday, he was more stable, in that he didn't have drops or need quite as much rescuing.  But he was still on nine liters of the good stuff.  Yeah, not so good.

But about 5 o'clock, we ran out of steam.  I couldn't even keep his sats in the mid 80's.  I tried another round of albuterol, and William bagged him back into the high 90's.  We tried one more time to put him back on the vent and he slipped right back down.  So it was time to give up and call for help.

But our monkey?  He was "helping" Dad bag him and laughing at us.  In the course of our conversation, Dispatch asked about his demeanor, was he talking, crying?  I said, "he's laughing at us."  "Excuse me?"  "Nevermind, he's fine."

So we're back, just a little more than 24 hours after we left.  His initial x-ray was kinda nasty and his labs weren't good either.  There was also a strange patch that was concerning so they repeated it again this morning.  Good news for us, it looked much better!

So our initial diagnosis was pneumonia, again.  But today we're not as sure.  It may still just be related to the anesthesia combined with his recent illness.  Regardless, he needs to come down on his oxygen so we can get out of here.

'Cause frankly, while I really am grateful for this place and all the help we get here, it's getting just a wee bit old to be here so much.

All I can say is this kid has been taking his "vacations" much more often than anyone else I know.

Oh, and how do you travel with a kiddo in a crazy huge hospital bed? You transfer him to a wagon.  But it still takes a nurse, a tech and a respiratory therapist to get him where he needs to go.  This kid doesn't travel light.

A vacation is what you take when you can no longer take what you've been taking. 

~Earl Wilson

Get Ready, Get Set, HOME!!

Time to get out of the hospital gown.

Lunch time while we wait for our papers.

And we're off!!

Now he's out.  Sound asleep.  Dreaming sweet dreams.

Oh, there's no place like home for the holidays...

He's Doing It!

This kid is looking good!  I mean, really!!  Check out his picture.  That green thing, that means he's breathing on his own, off the vent, just with oxygen bled in.  ('Cause you know he likes his O2.  Gotta have it.)

And he's been off the vent satting in the mid to high 90's on three liters of oxygen for most of the day.

Back on Thursday, when a few of us starting thinking maybe we were looking in the wrong direction, I asked them to try something.  I asked if we could try taking him off the vent and see what he did.  The vent works under positive pressure, which makes lung pressures higher.  Our lungs work with negative pressure.  The attending agreed and wrote the orders.

The poor RT.  Our nurse called him and said she needed him to come over to bed 6 and take her kiddo off the vent.

Silence, then the sound of a jaw hitting the floor.  "Whose idea was that?!?!?"  "Um, well, I've got orders for it."

When he showed up, I smiled and raised my hand.  "Crazy lady, that's me.  My idea."  We started joking about how the nurses in the PICU take care of crazy ladies, and sometimes their kids, too.  But, it worked.  He only made it three hours on Thursday, and another three or so on Friday.  Saturday and Sunday were a little longer. Today he's close to nine hours and still going strong.  And we usually get eight to ten at home.

Yep, I think he's got it.

He had an echo this morning that had lots of big words and findings, but the most important line for today was the last one.  "Compared with the prior study, there has been no significant change."

So as long as he can maintain this for the next week, he's got a good shot at being able to have his surgery next Tuesday.  I mean, it's possible that anesthesia will put the kibosh on it.  But Dr. M. said that as long as he could get to baseline by Tuesday (that's where he's at and it's Monday) and maintain it all week, and  we could get an echo that looked Aaron-good, surgery should be okay.

So I'm kinda excited.

Before we leave tomorrow, they'll give him another immunization.  See, they give kids a pneumococcal vaccine (Prevnar) as part of their scheduled shots.  But the one kids get covers 13 different bacterial infections.  The one recommended for older adults covers an additional 10, plus it covers the original 13 but in a different manner.  Kids can have that, too, but they reserve it for kids with underlying conditions, say like chronic lung disease.  Yep, my kid.

We've also been looking at his immune system.  Those tests aren't all back yet, but we'll be following them, too.

I think we may be locking him down for the winter though.  I hate to do that to him.  He loves to get out.  But his health is so important.  And he's got another surgery already scheduled for the end of January.  No way they'll do that one if he's been sick.  This one is short and simple and needs to be done sooner rather than later.  That one is longer and they'll put it off if he's not 100%.

So onward and upward, and we'll be home for Thanksgiving.  And hopefully, he's been listening as I've told him that this was his holiday visit.

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

~Robert Ingersoll