Sometimes You Gotta Just Laugh...

8 o'clock meds

I live in awe of some of my fellow special needs moms, especially the heart ones.

One sweet little girl has been flown to Mayo twice, had a ton of emergency procedures, and really put her family through the wringer.  Mom mentioned that she's now at 21 doses of medication a week, down from a high of 140.

I thought, Wow!  I mean, really, that's crazy!  And started wondering how many Aaron gets.  So I went and counted.  Now, I'm NOT minimizing what her family has been through.  Truly.  In many, many ways, their journey has been fraught with so much more than ours has.

But when I counted, I started laughing.  Yep. He takes a lot.  This month, he gets 25 doses a day, so 175 doses a week, and that doesn't count his oxygen, which yes, is a drug.

He takes one thyroid medication, two vitamins and two nutritional supplements (coconut oil and probiotics).  He has two heart meds, one allergy med, and a diuretic to keep the fluid from building up too much.  He's on FOUR (4!) asthma meds, one oral (okay, g-tube), two maintenance inhaled meds, and this month, a rescue med that he actually has to take twice a day.  And an inhaled antibiotic to try to keep the bacteria in his lungs from getting out of control (again).  Plus one for acid reflux.  And most of those are given more than once a day.

That's this month.  We're cycling the antibiotic and rescue med every other month.  So next month we get to drop down to 21 doses per day.  Then back again to 25 and so forth.

And that doesn't take into account any other antibiotics, steroids, rescue meds, etc. that he can end up on.

We try to cluster his meds as much as we can around 8 a.m. and 8 p.m.  It does make things easier that way.

Whew, no wonder I get tired, huh?

That's okay.  He's worth it.  And the good news is, most of the time, it doesn't take any brain power to keep it going.  We've got our routines, our patterns.  And as long as everyone plays nice (asthma, pulmonary hypertension, etc) it's all good.

Thank heavens for modern medicine.

In other news, we did our annual candy cane sled races last night.  Andrew has decided Matthew needs a run for his money on the "Grinch sled."

And while one-armed typing is very slow, it seems to be helping a little bit with my elbow.  It's still pretty painful, and they physical therapist is beginning to think I've plateaued, at least it doesn't wake me anymore at night.  Plus, since getting my thoughts out is a whole lot slower this way, hopefully it means they're a touch more coherent.   One can always hope, right?

.Life is either a daring adventure or nothing.

Helen Keller

So Many Thoughts....

Sharing Secrets

It's Christmas Eve, and there's lots of "stirring" going on around here.  Although in truth, many of the olders are still sleeping.

We've had our requisite medical issue, but this year was much more manageable than last year's.  Last year, Aaron and I Lifeflighted on the 23rd.  Some friends of mine did last night, and many others are in the hospital as well.  But we're at home.

No, this time it was Michael vs the tree on the sledding hill.  He's broken his right thumb, but it's in a brace and he's doing pretty well.  I'll take a visit to the ped and an x-ray at the hospital over a Lifeflight and PICU stay Any. Day.

As Santa Watches

Most of the presents are wrapped, most of the baking done.  I've got a few minutes to sit and reflect.

Santa pictures seem to be a part of each year.  Even Aaron's first year, tiny and fragile and oh so tenuous, I managed to get pictures.  But this year we were in the hospital for one of the parties, and we decided it simply wasn't worth the risk to take him to the church party or find another Santa.  I mean, four pneumonias in five months will make anyone a little gun shy.

But then a friend had a "connection" to Santa.  She put a bug in his ear and guess who showed up on our porch on Monday.  Yep, the big guy himself.  Such a sweet blessing.


It's been a tender time for me.  During our last admit, another friend mentioned that this was their very last admit.  There's only one reason you can say that in the medically fragile world.  And her sweet Izzy went Home last week.



The day after she passed, another little girl, active, vibrant, full of life died, too.  Unlike Izzy, Jalyssa's death was due to the neglect of the nurse that was supposed to be caring for her.  Her trach came out, she wasn't attached to monitors, and by the time the nurse noticed, it was too late.  Heartbroken over Izzy, I was devastated for little Jalyssa's family.  But in addition, I was angry and scared, too.  We trust others with our children's lives when we can't be there.  And when basic precautions, fundamental protocols are ignored, life as we know it changes in an instant.



So I hug my children a little closer, a little tighter.  Try to be a little kinder, more understanding.  Aaron is doing well under house arrest.  He got a gait trainer to help him learn to bear weight, and hopefully even take some steps sometime in the future.  He rocks out to the music anytime he's in it.  He laughs, he smiles, he breathes.  And I treasure every moment.

Only a few things are really important. 

~Marie Dressler

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