Rough Day

Playing with music therapy on Monday

Aaron is having a rough time this go around.  

Yesterday it seemed like things would be pretty straightforward.  Kinda a “lather, rinse, repeat” thing.  Been there, done that, bought the t-shirt.  You know, same old same old.  

Today, not so much.  He’s been tired, sleeping quite a bit, and when he’s not sleeping, he’s not satting well.  As in, we’re back on 100% oxygen and spent most of the day hanging in the mid-70’s.  A couple times we dipped into the 50’s and 60’s.  Yeah, not so great.  

He seems to be moving good air in his lungs.  He’s not wheezy, although albuterol does seem to help, briefly.  They repeated the x-ray with the same results, a good thing, it opens up the possibility of using steroids on him.  

For now, we’re increasing his support on his ventilator.  If that doesn’t work, we’ll change to a bigger vent.  

But it’s kinda hard.  He’s happy, don’t get me wrong.  We’ve still got smiles and all his hijinks, pulling off leads, teasing, etc.  But still...

So what did I do?  I escaped briefly and had dinner with two other moms.  Two moms who are facing the same long-term outcome.  And we talked and laughed, and tried not to cry.  Gotta love people who just “get it” ‘cause sometimes, that’s the only way to keep from losing your mind.  (Okay, maybe too late for that, but you know what I mean.). 

Anyway, we’ve had the “talk” again.  And I “talked” as well.  There is no mistaking that we are still a full code, that if he doesn’t respond to the vent settings or the bigger vent, we’ll escalate from there.  There will be no giving up.  This kid still has way too much life and joy and goofiness going on.  We’re not giving up, no one is.  

But sometimes, sometimes it’s hard.  

"If you can't fly then run, if you can't run then walk, if you can't walk then crawl, but whatever you do you have to keep moving forward."

—Martin Luther King, Jr

Here We Go Again

Last night in the ER

Yep, we’re back, a month and a half after discharge.  Kinda rough.

This one hit us out of the blue, and I won’t lie, it made my thoughts go places no mama’s thoughts should go, mostly because I didn’t see it coming, not much anyway.

Aaron was good, really good, almost all week.  He went to all the concerts, one each night, and loved them.  No problems, no issues.  And being tired out, he slept well at night, too.

Until Friday, that is.  Friday started out like any other day, just fine.  There was a little more suctioning the night before, but our pollen counts are also sky high, so whatever.

And then his nurse called me at work from school. He was running a fever. 101.1  She was suctioning a lot.  He was seizing quite a bit.  And he was maxed out on his oxygen and still not able to maintain his sats.

The call came in one minute before my lunch break, so I quickly explained the situation to the front office and left, promising to be back as soon as I could, but it would probably take a little longer than my 30 minutes.  Raced over to his school, got him home, helped get him set up and went back.  I was a little late, but not much.

Then they asked me if my son was okay, if I was okay.  I didn't know, honestly.

Friday afternoon at home

We got the fever down and he slept, pretty much all night, from 1 pm to 7:30 am.  (Seizures will do that to you, wipe you out.). Still it was hard to keep him stable.  We have a big M-90 tank, the size that ambulances run with for emergencies.  We blew through that in less than 24 hours, and often when he wasn’t on it, we were bagging him.  We tried to stay home, we really tried.  Yesterday was Andrew’s last soccer game, there were things that needed to be done at home.  Graduation is coming up, dance festivals, etc.  But eventually I had to throw in the towel and give up.  

He’s resting now in the PICU.  It’s not pneumonia, my biggest fear.  It looks viral.  We’ll have to see how it all plays out.  At the moment, this very moment, he’s looking pretty darn good.  But he’s also asleep.  I’m sure that will change when he wakes up.  

So Tincture of Time and all that.  We’ll make it through this one, too.  Just needing more support than we can give him at home.  

Amazing what a kid will pull to get a “vacation.”  

                   Xray time

[M]an can accept pleasure only to the extent that he is willing to accept pain... 

the rejection of either eliminates both. 

~Thea Alexander

Living Life

My Superhero (badly in need of a haircut)

How has it been so long?  I keep having these thoughts racing round and round in my mind, and thinking, "Oh, I need to write about that."  And then I don't.  Something about work and kids and just life, you know.

It's been a busy month, but (mostly) in a normal, regular life type of way.  Two weeks ago, he was acting "off."  It went so far that one Tuesday at school, he was crying and had a low-grade fever.  I was a little concerned, but not much.   I know, right??  My kid crying with a fever and I'm not wigging out!  But I looked at what he'd been doing, great oxygen when upright, not so much in bed, not sleeping well, fussing with his trach ties, and wondered, ear infection?
 

Waiting for our prescription.

So I called his ped.  They didn't have any appointments available (funny how that happens when you call about 4 pm) so they put me in after hours.  We went, they were behind, we waited our turn!!  Again, who'd have thunk??  And yep, kiddo had an ear infection.  We went to the pharmacy, waited again, got that pink bubblegum medicine (too bad he doesn't taste it) and went home!!!!  You know, like a normal kid!

I know, I know, waiting isn't fun for anyone.  Except, sometimes, it is.

You don't wait when your child isn't breathing.  You don't wait when oxygen sats are dropping.  You don't wait if there's a possibility of things going south really fast.  Then it's all hands on deck.  I've been there as they've called a "red patient admit" to the ER, and it was us.  I've been there as they've called "rapid response" to his room, too many times.  I've taken that phone call when I've stepped away from the hospital briefly that begins with a deep breath, and they tell you what has gone down (and down is the right word).  Yeah, not much waiting there.  So waiting?  Yeah, it made me laugh, and almost cry.

He's doing well on his seizure med, we think.  Still seeing a few here and there, and wondering if I'm missing some.  See, they're pretty short, usually less than a minute.  But they also wipe him out.  The good thing is we haven't had to use his "rescue" med.  They've stopped on their own.

He's also been a bit of a punk from time to time.  A couple weeks ago, he threw a plug while I was gone.  Dad and Andrew worked on him, bagging him and suctioning while I raced home.  And Aaron?  Well, he may have a career in plastic surgery someday.  Dad is trying to save his life, and he's trying to remove Dad's nose, pull his hair out, and basically laughing at them.  Crazy kid!  I mean, who does things like that when they aren't breathing well?  My child, apparently.


Then last week, my niece graduated from BYU.  To celebrate, they invited family to come to the Gardens at Thanksgiving Point for the Tulip Festival.  Inside is a section called "Light of the World."  I have never seen this.  A beautiful rendition of scenes from the Savior's life, it was exactly what my soul needed. 

Awesome big brother pushed the wheelchair up hill and down.

Sometimes, things are hard.  And often the hardest times come when life is just flowing the way it's supposed to.  When we're not in crisis, I have time to think, to ponder, to try to make sense of things.  I'm reminded in small ways, and big ways, of the fragility of this life.  This week a girl, just shy of her 37th birthday, passed away after living a joyful life with T18.  Two weeks ago, Georgia was laid to rest.  Emilee and I sat and cried side by side at too many funerals, and then she was the one up front, while I was in the back.  It still isn't quite processing, and she isn't even my child.

But this evening in the Gardens, I found comfort.  The beautiful flowers were wonderful, and awe inspiring.  But as we entered this space, where there aren't many flowers, it's almost entirely xeriscaped, the first image was one from Peter's perspective after he's left the boat to try to walk to Jesus on the water, only to lose faith and sink.  And I was reminded, my Lifeguard walks on water, and He is always there.  He knows, He understands, and He loves me.  And because of that knowledge, I can find strength.

It is I.  Be not afraid.

Supervising basketball.  Love warm weather!!

We'll go on, making as many memories as we can.  Soccer games, impromptu basketball contests between brothers, haircuts and school.  Being silly and sleeping in late.  Trying new things, and even having "normal" experiences like ear infections.  We'll pack as much in to his life as we can, and by so doing, into ours as well.  Fill our cups to overflowing.  Because someday, those chances will be gone, and I don't want to miss out.

"Enjoy the little things in life, for one day you may look back and realize they were the big things."
~Robert Breault

Georgia On My Mind

I woke this morning to find my friend's daughter gone.  I don't even know how to process this.

Emilee and I have an interesting relationship.  Most mom friends bond over teething, potty training, solid foods.

Well, Georgia and Aaron both got teeth, but other than that, well...

We bonded at funerals.  Yeah, you read that right.  Funerals.  For small children. Babies and preschoolers that never took a step, never went to school.  I know, bizarre.  It's so beyond the comprehension of most parents, and that's a good thing.  But not for us.  And it was hard, but we were together in this strange, unique club of moms who knew their kids were never going to grow up, but never gave up either.

And now she's gone.

Georgia is a twin (yes, IS, she's still a twin).  Her sister, Eden, is a firecracker!  Their little family has been a force for so much good here in our state.  Emilee spearheaded and fought for the Medically Complex Child Waiver (MCCW) that was piloted for three years and just became a permanent program this past year.  What many don't know is that Emilee created this with others even though her daughter didn't need it, wouldn't be using it. She looked around and saw a great need and worked to address it.  Because of Georgia, Emilee has blessed the lives of so many, so very many people who will never know of the countless hours and tears behind the legislation.  

My heart aches.  I don't know what to do.  I sit here as one single tear keeps running down the left side of my face.  I wipe it, and another takes its place. She's gone.  Her spirit has left her tattered, broken body.  She's free and healthy and dancing like she never was able to do here.  But her family has been left behind, broken, battered, much more by her passing than ever, ever with her care.  I can't imagine, I don't want to imagine.  It just hurts. 

Fly high, little one, dance free.  You have touched more lives in your short time than most will over decades of living.  We won't forget you. 

Click here to watch Georgia and Eden dancing.

Georgia, Georgia

The whole day through

Just an old sweet song

Keeps Georgia on my mind

I said Georgia

Georgia

A song of you

Comes as sweet and clear 

As moonlight through the pines 

Home from “Vacation”

 We did it.  We made it home.

Last week was Spring Break, and I guess he figured everyone else was going on vacation, so he needed to, too.  That or his brothers were trying to get out of work.  My plans included getting some yard work done and cleaning out a few areas of the house.  Yeah, guess whose plans got scrapped.  Oh, well.

Instead, Monday through Friday were spent at his “other home” and the brothers had a movie watching marathon.  I guess if you don’t get to go somewhere, it was a good second choice.

He’s doing better now.  I LOVE the way this kid breathes when he’s on steroids.  Unfortunately, staying on them all the time just isn’t an option.  He’s still having a few siezures here and there, but overall, the Keppra he’s taking seems to have made a big difference.  We finally ventured out today, and tonight he’s pretty wiped out.  Kid better get his beauty rest in.  School starts up again tomorrow and continues at a break neck speed for the next seven weeks.

In other news, his heart numbers have come down a bit.  They’re still not “normal” but from Friday night to Monday night they dropped from 219 to 180.  I’m hoping they’ll continue the trend.  He’s still on the vent 24/7 and I’m not sure how long it will be until he can come off again.  What I do know is that he’s going to keep doing things his own way.  And that’s just fine.

“The thrill of coming home has never changed.“

Guy Pearce

Back Again

A Rough Week

Playing with one of his favorite toys during a brief
awake time this week.

The title kinda sums it up.  It's been a rough week.  On Monday, I reached out to both his regular ped and his special needs ped.  Between the two, we got things moving quickly.

EEG fun

Tuesday morning, he was fast-tracked into neurology.  Wednesday morning, he was having an EEG.  Wednesday afternoon, I saw the report. 

This was an abnormal EEG, awake and asleep, because of excess posterior slowing and sharp waves.  The record suggests a degree of encephalopathy and an underlying, likely focal, seizure tendency.

Yeah, seizures.  And a tired, non-smiley child.  A little boy who usually breathed on his own for eight hours or more a day, who couldn't go without the ventilator for more than ten minutes.  A child who slept for hours upon hours, not waking well, and needing more and more oxygen.
 
Friday evening found us in the ER at Primary's.  I was concerned that there might be an underlying illness or infection driving the seizures.  On the way up, I got a call from neurology.  They wanted to put him on a seizure med, half dose for the first week and then a full dose.

He had to be sleep-deprived for the EEG, so we were
doing everything we could to keep him awake. He
does love the piano.

We spent seven hours in the ER.  It took an hour to get an IV.   Five pokes, and they weren't quick.  Each one involved a tourniquet and looking, and several minutes each time trying to thread the needle and catheter into tiny veins that are scarred and roll.  It wasn't an hour of just hanging out.  It was an hour of pain, and all I could do was hold him, and pray that this time they would be able to get it.  Please don't get me wrong.  These were experts.  They're the ones that can get his IVs.  He's just that hard.

Doesn't everyone hope to spend the start
of spring break in the ER?

Then the x-rays and waiting, and trying to figure out just what the labs meant.  I mean, some of his numbers were screwy, but not by much.  His heart numbers were elevated, but they reached out to his cardio who checked some other values and wasn't too concerned.  

I did get to meet with a friend of mine, one of my "posse" whose daughter takes the same seizure med and has for a long time.  What a relief to talk to her, hear how it works in "real life," what it's like and so on.  I was so nervous, scared, stomach-tied-in-knots before.  I'm still not thrilled that he needs it, but she was heaven-sent on Friday.  I went from "no way, can't do it," to "okay, well, here we go again."  That's a gift that no medical professional could have given me.  Only another mom could do that. 

Leaving about midnight.  At least one of us
got some sleep.

Are the seizures driving his pulmonary hypertension higher?  Is the pulmonary
hypertension pushing his seizures?  We just don't know.  The only way to really look at his brain would be an MRI, but that carries significant risks as well.  He would need to be put under for about an hour.  He recently had pneumonia, which makes anesthesia riskier.  Plus there's the whole thing about him and anesthesia not getting along real well anyway.  I don't think we'll be looking at that, at least not for quite a while. 

He is doing better.  He's still sleeping a lot but not as much as before.  I'm suctioning his trach quite a bit, but it's still manageable.   And when he's awake, he's smiling again.  He still can't be off the ventilator much at all, but I'm hoping we get there.  He's still recovering from the pneumonia.  It's going to take time.  That's okay, he's got it, as much as he needs. 

Twice in the last little bit boys with Trisomy 18 have passed on.  One was almost 12, the other was four.  A reminder of what we will face.  Fielding questions from his siblings.  "How bad is it?  What's happening?  What does it mean?"  Frankly, I really don't know.  I think it's just another bump, pretty sure we'll get through this just like so many other challenges.  But it weighs on me. 

Which brings me to today:  Easter Sunday.  What a blessing, what a lifting of a burden.  Because of Him, I can do it.  Whenever we face it, I know death is not the end, but a necessary step in our eternal progression.  Because of Him, goodbys are not forever.  Because of Him, I am strengthened, upheld, loved.  I am His child, a woman of faith, a beloved daughter. 

 "I can do all things through Christ which strengtheneth me."

Philippians 4:13