Tuesday, December 29, 2015

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

Thursday, December 24, 2015

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

Sunday, December 13, 2015

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.


Wednesday, December 9, 2015

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

Sunday, December 6, 2015

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

Saturday, December 5, 2015

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

Thursday, December 3, 2015

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

Tuesday, November 24, 2015

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...

Monday, November 23, 2015

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

Saturday, November 21, 2015


This was the view outside my window this morning.

Last night, Aaron transferred to the floor and he's done pretty well up here.  But during the initial exam by the hospitalist, we heard a new sound in his heart.  One we haven't heard before.

And it was distinct enough that my uneducated ears could hear it, too.

Everyone knows the heart makes a lub-dub, lub-dub sound.  At least it's supposed to, right?  But sometimes, it makes other noises, too.  Sometimes it's no big deal, and sometimes it's a VERY big deal.  And we didn't know what this was.

In the past, we've sometimes been able to hear a "split S2" sound in his heart.  You know, the "dub" part.  It's not a problem, at least the split isn't.  It's caused by his pulmonary hypertension and it comes and goes.

But what we heard sounded more like a "split S1," (the "lub") something not often heard until someone is in their 40's or so with an unrepaired heart. Yeah, he may be older than a lot of T18 kiddos, but he's not that old!

All of a sudden, I found the anxiety ramping up again.  Really, when anything "new" comes along, it happens.  Fortunately, cardiology was more than willing to come take a look at him.  Turns out that it's not a split S1, it's a clicking noise.  (Who'da thought the heart could make so many different sounds?)  And it's caused by the valve that goes between his heart and the blood heading to the body (aortic valve).  Apparently, he's got a bicuspid (two) instead of tricuspid (three) like most people and it was making a noise as it opened and closed.

This earned him an EKG during the night (which was normal) and an echo on Monday.  But this morning, it was all quiet again.

And I reminded myself, once again, to just breathe, be still, and let go.  Sometimes that's hard to do.

That's what I was thinking about this morning as I watched the sun touch the tops of the mountains on the other side of the valley.  There were some interesting apparatus outside our window, and they didn't contribute much to the view.  I could choose to focus on them, or I could look at the big picture, look beyond the metal shapes, and see the grandeur of God's glory.

I could focus on us being here in the hospital, waiting for Aaron's heart to be happier, all the things I can't be doing, places to go, etc.  Or I can enjoy playtime with our perfect tattered angel.  I can make friends with other parents here, laugh with our nurses and RTs.

A couple weeks ago, I was asked what I thought our chances were of being home instead of in the hospital for the holidays.  It's probably about 50/50.  (Except I've now told Aaron this counts as our holiday visit.)  50/50 doesn't sound so good, except there's only one way to guarantee we won't be here.  And we're not going to talk about that one.  And that's how I try to deal with what we do.  It's more than worth it, the struggles, the difficulties, to have him in our lives.

Aaron is doing better, really he is.  He's just not better enough for us to come home yet.  Today he spent five hours off the vent.  It wore him out, but he's processing oxygen better.  It's kinda like when you have sore muscles after a workout.  (Not that I've really experienced that in a long time.)  It hurts, often for a few days.  And there's nothing you can really do to hurry up the healing of those sore muscles.  This is going to take some time to get his heart back where it is working as well as it was before.  But he'll do it.  We'll get there.

It's all a matter of perspective.  And I'm working on mine.

A penny will hide the biggest star in the Universe 
if you hold it close enough to your eye. 
~Samuel Grafton

Thursday, November 19, 2015

What if We're Chasing the Wrong Dog?

We're starting to wonder on this one.  He did grow out strep bacteria in his lungs. That part is real, but we're treating it and have been since Saturday evening.

You know how after 24-48 hours on antibiotics you're doing much better?  Yeah, well, not this time.

But his lungs sound good, really good.  All that nasty garbage that pneumonia creates in the lungs?  That's supposed to be suctioned out, except we're not getting anything.  Maybe a little bit of white stuff, but nothing special.

Oxygen is high.  Someone brought up in rounds that maybe we're chasing the wrong dog.  What if it's not his lungs?  What if it's his heart?  What if it's the pulmonary hypertension?

And then the trach whisperer showed up in my door and asked the same question.

We're maxed out on pulmonary hypertensive meds already.  There are no new ones to give him that he can stay on.

This could be a longer haul than we planned on.  We've done this before, waited and waited for massive amounts of oxygen to do their magic and bring his pressures down to where we can manage it at home.  It takes time, sometimes quite a bit of time.

But as I was going over protocols, I remembered, he's been higher.  We've had to use nitric oxide before when he's been on the hospital vent, using much higher amounts of oxygen, and still not satting well.  We're still a long ways from that.

FYI, nitric oxide is very different from nitrous oxide (laughing gas).  One you get at the dentist, it makes you feel good, they turn it off, and you go home.  The other, nitric oxide, is only used under special circumstances, closely monitored, and weaned very, very carefully.

So I guess I get to practice patience.  I'm not very good at it yet.  I'm grateful that we've been working on strengthening his heart and lungs by spending time off the vent.  I'm pretty sure that's helped keep us down where we are.  And I'm very grateful we're still worried about this, working on it.  There's only one way to guarantee we don't deal with it anymore.

And I'm not even going there.

How poor are they that have not patience!
What wound did ever heal but by degrees?
~William Shakespeare

Wednesday, November 18, 2015


Our happy  boy is back.
The last three days the PICU team has talked to the floor team about us transferring.

The last three days, Aaron has emphatically said, No!  And each day just a little louder.

Today was no exception.  In fact, we've taken to repeating some tests just to make sure things are on the right track.

Showing off his jingle bells, the ones
that have the unit looking for Santa.

He's needed more and more oxygen again.  Right now, he's asleep on ten liters.  We might be able to come down some more, but he was really struggling awake on 15.  Yeah, that's five plus ten.  Fifteen.  We bagged him, gave albuterol, finally decided just to tolerate mid-80's for a little while, and then he fell asleep and we were finally able to gain some headway.

Repeated chest x-ray, which looked the same.  Going to repeat his "protected brush" but hopefully not until he wakes up. That's where they reach down into his lungs with a sterile brush and gather some cells, then grow them out.  And while we're waiting for results, they'll change up antibiotics to make sure we're covering other bugs.

But he's happy, playing, goofing off.  So we do have a step forward.

And eventually, we'll make it to the floor, and then home.

Optimist: Someone who figures that taking a step backward after taking a step forward 
is not a disaster, it's a cha-cha.
Robert Brault

Tuesday, November 17, 2015


Last night, Aaron made the jump to his home ventilator.  So yea!

In fact, this morning, he was only on six liters of oxygen.  The doctor asked if I was comfortable discharging today from the PICU or I thought we needed a day on the floor first.  I knew we weren't ready to go home today, so we decided on the floor.

Except, once again, we forgot to ask Aaron.  I was a little leery of the plan because he was asleep and had been, but still, it was only six liters.  I'm not real comfortable taking him home on six, but if we're at home, I also don't bring him in for it.

Then he woke up and his oxygen needs went up.  And up.  And up some more.  Yep, to the tune of 15 liters for a good part of the morning.  Yeah, not so good.  The floor won't touch him when he's that high.

So we're still in the PICU.  Daddy came up and gave him a back rub and brought up the wheelchair so he can be more upright.  It helps to get the junk moving out and the oxygen moving in.  But he's still pretty darn tired.

He just fell asleep again, completely wiped out.  And guess where he is. Eight liters and satting 96%.  Probably turning him down again.  Part of me is wondering if we made the jump too soon.  Really, we're pushing about the same amount of oxygen through this vent as we were through the other one.

Oh, well.  He'll get there.  He's really, really tired, but he did smile and play, and  even laugh when Daddy was here.

And I've made some new friends while we're here.  There are some truly beautiful souls up here, fighting big battles along side their little ones.  I am made richer for knowing them.

Strangers are just friends waiting to happen. 
~Rod McKuen

Monday, November 16, 2015


Today's been a better day in some aspects, and not quite as good in others.  That's okay, the better part outweighs the worse by a long shot.

Yesterday and through the night, Aaron wasn't using much oxygen.  We all thought he was probably ready to make the jump to his home ventilator.  But what worried me was his demeanor.  And while there are a lot of new staff members here, there are still enough older ones to know what he's usually like, and they didn't like it much either.

See, Aaron truly enjoys the hospital, and especially the PICU.  He laughs and plays and there's always someone new to see.  He thinks it's totally a party place.  Last time we were here, he didn't even sleep for more than an hour or two at a time until we'd been here three or four days.  Not this time.

Saturday night, all day yesterday, and last night he slept.  And if he wasn't sleeping, he was lethargic.  Not interested in playing, not interested in smiling.  And not happy.

So while he wasn't needing much oxygen which was good, he wasn't himself, which was bad.

This morning at rounds, he was only using 35% oxygen, way, way below what he had to be to go back to his home vent, so they wrote up the orders to change.  He was also just waking up.  Um, before the doc moved away from the room, he'd been cranked up to 60%.  Oops.

And he's been between 40 and 65% all day, usually right around 50%.  BUT he's been happy and playing.  Making cute sounds, playing hide and seek in the sheets.  Music therapy came in and my non-verbal kiddo convinced them to leave the jingle bells behind.  You could hear him through the whole unit for a few hours shaking them.  It almost sounded like the Salvation Army guys at Christmas time.  And he brought a smile to many faces the same way they do, too.

So if I get to choose, I'll choose happy boy using too much oxygen.  'Cause we can always work the oxygen down.  His labs have come back and he's growing a new bacteria this time, strep pneumonia, sibling to the strep throat that so many get.  And as far as bacteria go, that's an okay one.  We can use a fairly light-weight antibiotic to treat it, so he's now off his big-gun IV antibiotic.  It's just going to take some time to get back to where he needs to be.  But that's okay.  He'll get there.

This morning I woke up to the news that one of our Trisomy sweethearts went home.  My heart is aching.  Two years older than Aaron, she has been such an inspiration to me.  Her mother calls herself blessed for having had that time, but I know she's brokenhearted, too.  We treasure these times, these moments we're given.  It always ends too soon.

I'm holding a teardrop for a friend
Until his heartache and misery end.
~Terri Guillemets

Sunday, November 15, 2015

Pneumonia -- Longest Four-Letter Word I Know.

It's been a little while since I wrote and a lot has happened.  If you just want the down and dirty, he's back in the PICU at Primary's with pneumonia.  We were admitted last night.  He's doing "okay" but certainly pretty sick.  So if you're in a hurry, you're all caught up.

If you wanna kick back and read a novel, well, here's what's been going on and how we ended up here.

Last Sunday, he seemed to have a tummy virus.  He had a rougher day, and was kinda sad, but also weathered it pretty well.  Even managed to pass it on to Mommy for the next day.  That actually has no bearing (that we know of) on what's happening now.  But I also use this to keep track of what's going on in his life, so there you have it.

Wednesday was a long day of appointments with a few different specialists.  We went over various things that have happened since they last saw him, like his scoliosis worsening and his possible seizures.  Not a whole lot to note there, but now it's been documented.

We also discussed his nasty ear infection and where things will go with that.  We'll try replacing his tubes and see if that plus washing out his ear well gives his body the advantage it needs to kick this bacteria that has made itself so at home in there.  Dr. M didn't seen totally confident that it will, but it's the first step.  If he continues to have infections, we'll have to look at something called a mastoidectomy, much more invasive and significant surgery.  I mean, it's just an ear infection, but the ear is also awfully close to the brain.  'Nough said.

Thursday, the surgery scheduler called and said he'd have surgery on December 22nd.  The 22nd!!  That was discouraging.  Six weeks away and our anniversary as well.  This was on top of a few other disappointments I was dealing with and I was having a really rough day.  But she said she'd put us on a cancellation list, and the Friday morning she called and offered us December 1st.  Yep, didn't even look at the calendar.  Just said, "thank you, we'll take it!"  Now that he's sick, they may not be willing to do it that soon, but I'll have to check into that tomorrow.

Friday was our day of fun, but also when some of his "fun" started.  He played hooky and came to Deborah's dance competition with me.  It was a blast, and he really seemed to enjoy it, at least in the morning.  She did really well, taking 2nd with her partner in their first competition.  It's the first chance I've had to see her dance this year and she's gotten pretty darn good!

But Friday afternoon, he started to struggle a little bit, and then a little more.  We ended up bagging him three times during the course of the next few hours and even changed out his trach.  I feel pretty good about being able to change that out and have no one else there realize we were even doing anything.  We just found a   quiet corner and did it.  About 6 o'clock, I called it quits and took him home where it was easier to work with him.

That evening, he maxed out on his oxygen for several hours.  But he was stable up there, and I figured if he needed more, that's when I'd bag him again and call for backup.  Once he fell asleep, he did much better.  He'd been "backed up" for a couple of days and starting at about 3:00 a.m. and on through the next few hours, he managed to have four good sized diapers.  And he looked pretty good, even awake.  So I figured that was the problem and we might be in the clear.  (TMI?  Sorry.)

But when I went in at 2 o'clock to give him meds and start his feeding, I noticed his heart rate was higher.  And the alert level ticked up again.  Not much really, but a little.  But I was also tired, so I left Andrew to listen for alarms and took a nap.  At 5 p.m., it was quite a bit higher.

As a side note, I've finally found something Google doesn't know.  Last weekend when he was sick, I was trying to find out how long the heart rate is higher before a fever manifests.  Lots and lots of things about how a fever causes a high heart rate, but nothing about the amount of time the heart rate is high before the fever shows up.  Funny, I guess most people aren't even aware of that, are they?

5:15 and I had to stop his feeding because he was gagging so much, and he started to have a (very low) temp increase.  5:30, we were bagging and I decided we needed more help.  Especially when each time I took his temp it was up by another 0.2 to 0.4 degrees.

So about 6 (or so??) I put in the call.  He did okay on the way up, although his temp continued to climb.  It wasn't actually a "fever" (100.2 just before they got there, 100.8 as we went out the door) until about the time the paramedics walked through the door.  By the time we were halfway here, it was 103.8  Yeah, pretty quick rise.

Just as we got here, he struggled even more.  All the way up, he'd maintained oxygen sats in the high 90's while we were bagging him.  As we were switching over, he decided he was done playing nice and struggled with mid-80's, even being bagged. I stepped aside and let the respiratory therapist use their bag and get really aggressive with it and the suctioning and he did finally respond.

We gave Tylenol in the ambulance and ibuprofen up in the emergency room.  By the time that started to take effect, he felt much better and slept for a little while, and looked AMAZING!  So there was a little talk of floor or going home.  I KNEW we weren't going home, and I was a little nervous about going to the floor.  Then he woke up and took matters into his own hands.  Even on the hospital vent, he wanted 15+ liters, so they found us a spot in the PICU.

His x-ray had some different opacities, not what you want to see, which leads to a diagnosis of pneumonia.  Plus, while his white blood count wasn't crazy, insanely high, it was high and heavily "banded" meaning it was sending out a lot of immature blood cells to help ramp up the fight.  So we have a fight on our hands. But the good news is that his viral panel came back negative, which means he didn't catch a rhino this time, or any one of another bunch of nasty viruses.  So antibiotics can definitely help in this battle.

Last night, I put up on his Facebook page that he'd taken a turn for the worse and we were being transported.  I can't believe the posts and prayers that came pouring in.  It made me cry.  And so many responses that I can't even reply to all of them.  But I have read every single one.  Friends who shared the post, asking for prayers on our behalf, the love and concern that has been shown.  I walked into church this morning and saw quite a few familiar friendly faces, other parents who are also here.  What strength I draw from them.  It is such a blessing to have the support and camaraderie of these other families.

I'm grateful for inspiration.  As I sat this morning and thought about how we got here, I thought about how on Friday we were maxed out on his oxygen, but I didn't really feel the need to do anything but watch.  I knew we could bag him if we needed to, but I was comfortable where we were.

But on Saturday, I wasn't.  We hadn't even completely maxed out when I started making preparations to come up.  Usually, I work on a three strikes kind of thing.  We bag three times in fairly quick succession before I throw in the towel.  But Saturday, that didn't feel right.  The first time had me throwing things together to get out of there pretty quick.

So we're in for a fight, but that's okay, 'cause he's a warrior.  Strongest little man I know.  What a blessing to have this hero in my life.  I miss this smiley face.  I can't wait to see it again.

"Sometimes real superheroes live in the hearts of small children 
fighting big battles."
Author Unknown

Friday, November 6, 2015


Memories are such funny things.  They have the power to make you laugh, cry, ache, rejoice. And the really crazy ones can do all of the above.

Facebook has this app that will show you what you posted on this day in the past.  Let's just say November 6th has had some "interesting" times.

Six years ago, I knew I was pregnant, and in my gut, I felt something was "up."  I didn't know what it was yet, but I knew I felt a lot sicker a lot sooner than usual.  I was on my way to my niece's wedding with one of my girls.

Intubated because he couldn't breathe on his own.
Five years ago today was the day we tried to extubate following his g-tube/nissen surgery the day before.  Didn't go so well.  In fact, downright bad.

Here's an example of what I wrote that day:
Running a fever now. Hoping to extubate and move to high-flow this afternoon, but Dr wants to talk to the ENT first. Hoping it goes well, because if they have to re-intubate they'll probably go straight to a trach. Really don't want to deal with that. Any words of comfort/wisdom from those who have trachs? I know it's not the end of the world, but I'm still worried.
Extubating now. Please pray for Aaron.
And finally:
Following his trach surgery, first time I ever saw my
baby's face without tubes.
Extubation didn't work. He tried so hard, but it wasn't pretty. His sats stayed up but he was working so hard & got so tired. CO2 was over 130, normal 35-45 & his ph balance slipped a lot. Then he started bradycardia. Never done that before. This was all within 15 min. So I guess the next mountain to climb is a trach. It's scheduled for next Tues. Two steps forward. One step back.
And so many prayers were offered on his behalf, and mine.  So much welcome advice and comfort from other trach moms.  I recently learned (like a few weeks ago!) that when CO2 levels reach as high as they did, and blood levels are acidic as they were, often patients don't recover, ever.  Glad I didn't know that then.   Sometimes ignorance really is bliss.

Four years ago found us back in the PICU, just across the unit from where we'd been the year before.  We'd also been there a few times in between those two stays.  But this time we were on the downhill side of our stay.  He had rhino (of course) but we also discovered that he had asthma as well.  That's also when I found out that the year before there were some measures put in place to act very quickly if he crashed had.  I had suspected, but not been emotionally able to ask about them.

Three years ago was a good time.  We were getting ready for his Sleepsafe bed.  That's the really awesome bed that will fit him forever, that goes up and down, raises and lowers his head and feet. and lets him turn sideways to sleep in the trough created when his legs and head are raised. Exactly what he's doing right now. Silly boy.

Two years ago we were enjoying a rest, an in between time where we were at home.  But he'd just gotten home from the hospital a couple days earlier, and although we didn't know it, we were going to be headed back in right before Thanksgiving.  So I guess it was our eye of the storm, right before the wind started howling again.

Last year, well last year we did manage to avoid the hospital, but he did seem to think he needed to pull out the tricks again.  He had a bad asthma attack at school.  I went down to pick him up when he wasn't really responding to treatment, and he decided to "throw a plug" just after I got there.  He had a big ol' sticky bunch of mucus plugging off his trach, making it impossible to breathe.  Not hard, impossible.  So we did an emergency trach change on his classroom floor.  Fun times.  And what were they studying that day?  The letter B.  Yeah, B for breathing.  His nurse and I thought that was pretty funny.  Really, once it was all over, we did.

This year, well today has been pretty quiet.  He's still struggling with that darn ear infection.  We did the vinegar rinse for another week, and the drainage came back about 48 hours after we stopped.  Plastics has scheduled him for his upper gum repair the end of January, so we're probably looking at doing two separate procedures.  I don't think his poor ear can wait that long.  Something we'll talk about on Wednesday when we see several doctors at the same time.

But he went to school today and had a great time.  He was off the vent the whole time and for a few hours after he got back home.  He's using it now for a late afternoon nap but we'll turn it off once he wakes up.  He knows his colors and emphatically chose his Superman shirt this morning over his Awesome one.  Yesterday he enjoyed beating a bongo drum and was very excited about using the clapper for "Up on the Housetop" that they're preparing for a Christmas concert.

Yeah, our little man loves his life.  He's fought hard to have it, and we're so grateful for all who have taught us how to care for him.  Looking back, it's so easy to see the blessings, the tender mercies that have come with having him part of our lives.

A memory is what is left when something happens 
and does not completely unhappen. 
~Edward de Bono

Friday, October 30, 2015

All I Want for Christmas Is...

My Two Front Teeth!  Yep, he's lost 'em.

The first one got pulled in the OR a year ago.  The new one hasn't grown in yet.  The second one has been getting steadily looser.  When we saw the dentist this week, she said they'd pull it if he still had it when he goes in for his cleaning.

I guess he wasn't having that.  He lost it yesterday.  My funny gap-toothed kid.

That's six now he's lost, at about the age when his olders were losing their first.  I guess he thinks he's got to hurry and catch up with them.

And just for giggles, a funny video from PT (physical therapy) last week.  He wasn't too concerned on working in the gait trainer, but he sure had a lot of opinions he wanted to expound upon.  He's definitely my kid, through and through.

Life is like a mirror, we get the best results when we smile at it. ~Author Unknown

Wednesday, October 28, 2015

Surgery It Is

Yep, that about says it.  Sometime in the future, probably next few weeks, Aaron will be heading into the OR again.

He's certainly been there before although not as much as some.  Of course, that's in part due to us piggybacking as many surgeries into one trip as we can.  And so far, we're looking at at least three things.

The reason we're doing it sooner rather than later are those darn ears of his.  Our visit to the ENT last week showed that he doesn't appear to have an active infection anymore, (YEA!!!) but his left tube is sitting ON, not IN his eardrum, and we can't find the right one.  Given that this kiddo comes up with an ear infection every six to eight weeks, well, he needs tubes.

He'll also have a dental cleaning.  Now, I don't know about you, but I think I would be okay with going under general anesthesia for my dental work.  Somehow, I haven't been able to convince anyone that it should happen that way for me.  But they're totally on board for Aaron.

These two really are easy peasy.  He doesn't even have to be able to breathe on his own afterwards.  Ventilators can be really handy things.  We usually start a timer as soon as he leaves the OR and we're on our way with walking papers after the minimum required time.

Except I said we've got three things on the docket this time.  Yep, one more.  They're going to fix the notch in his alveolar ridge.  That's the bone that makes up your upper gum in your mouth.  He's got a gap there.  It's been kinda handy.  Perfect place to stick his finger in his mouth.  Except apparently, that bone helps keep your face from collapsing, like a keystone in an arch.  And he's missing some of it.  I had noticed that it was smaller than before, I guess because it's coming in on itself.

So they'll use something called "bone putty" to close it off.  It will work better than a bone graft from his hip, and has the added benefit that we won't have a second surgical site to deal with.  I'm told it's same day surgery, but he'll be really swollen afterwards, and it will be about a six week recovery.

So there's a lot going on.

And to top it off, he's still trying to overcome the pneumonia and the bacteria he grew out back in September.  Remember when we spent Thursday of Fall Break in the ER?  Well, I figured this time I'd misread things.  Apparently he didn't really need to be seen.

Except it turned out that he did.  He continued to struggle through the weekend.  Not really bad, but not his normal self.  He couldn't be off the vent at all and we were using yet more oxygen.  Plus the "junk" in his trach was turning some interesting colors.  At least interesting in an academic sort of way.  Not so interesting when it's your kid and his health, or lack thereof.

Monday morning I got a call from the ER doc.  Yeah, the doc.  Not the secretary, nurse or even intern.  They took a sample from down in his trach on Thursday and it was growing massive quantities of bacteria.  So back on antibiotics he went.  We're almost done with them now, and I'm hoping, HOPING, that we can have a good long stretch of health here.  We're due for it.

Plus doctors really don't like taking people into the OR who've been sick recently.  And when it's a pneumonia, they like a good six plus weeks.  We need the surgery, we need the health.  They kinda go hand in hand.

So onward and upward we go.  And aren't we lucky to get to enjoy these smiles?  Such a blessing this kid is.

I learned a long time ago that minor surgery is when they do the operation on someone else, not you (or your kid). 
~Bill Walton