New Plan: Making it Work

A week ago Aaron went into the hospital for a lung CT scan.  Prior to his pneumonia in December, he was often off the vent up to eight or nine hours a day.

Since then?  Um, not so much.  Like most days, not at all.

I was hoping that with the new trach, all our problems would be solved.  (See how I work?  New equipment fixes everything, right?)

It DID fix a lot of issues, but not that one.  Some days we could do an hour or two, most days we had to throw in the towel after ten minutes.

Is it disease progression?  (Somehow that seems to be a common phrase.)  Or something else. 

Well boys and girls, it might be disease progression but there's definitely something rotten playing into it as well.  Something sticky and nasty and gross, and it's stuck in his lungs.

CT scan

Junk.  Mucus.  Snot.  Whatever.  And there's a decent chance it's been there since his pneumonia.  And not only is it blocking up individual alveoli, it's also blocking off sections of his lungs, trapping air, which means no gas exchange.  No oxygen in, no CO2 out.  Yuck.

So how to get it out?  Well, that's the rough part.  We've increased his vest treatments to three times a day and also added in something called hypertonic saline.

Normal saline is 0.9%, about what our blood is.  Our bodies are 0.4%.  Oceans are about 3.5%.  And the hypertonic saline we're nebulizing into his lungs?  7%!

Yeah, breathing in salty humidified air that is twice as salty as the ocean.  Doesn't that sound fun?

Um, not really.  And he doesn't like it either.  So three times a day (his nurses do one of them for me) he gets to do this.  He hates it.  I hate it.  He's fine with the vest and the albuterol pre-treatment.  But then the saline starts.  And within seconds, he starts coughing and gagging and retching.  We vent his tummy and he throws up whatever fluids and acids are in there (we do the treatment as long after a feeding as we can).  And we suction and suction and suction as he brings up the garbage that's been hanging out inside of him.

X-ray at Shriners

Did I say I hate this?!?  My poor baby.

But here's the thing.  He does it!  And he doesn't fight it.  He doesn't like it, but he doesn't disconnect, doesn't pull away.  He takes it.  We started this a week ago yesterday.  For the first several days, three times a day, he'd cry when I started the saline, but not before and not after.  Even though he knows it follows on the heels of the albuterol, he laughs and plays through it.  (And yes, he knows it's coming.)  The last few days, he's grimaced, but not cried through the treatments.  And as soon as the saline is done, he's back to being happy.  I mean, As. Soon. As. It's. Done.

How many of us can do that?  How many of us whine and gripe and complain about things we know will happen, have to happen, and then continue the grouse-fest once it's done?

And we're seeing results as well.  We do pull a LOT of garbage out of his lungs each time.  It takes about ten minutes or so to nebulize and we're suctioning pretty much all the time, giving breaks so he can catch his breath.  For the first several days, I didn't see any difference, except in the volume of secretions.  But the last two or three days, we're seeing lower oxygen needs, less sleeping, more vocalizations.  It is working.

We get to continue this until at least the end of August when we see pulmonology again.  It's still not fun.  But we're both settling in, him probably better than me.

In other news, we did his ear CT scan at the same time, but that looked good.  He also had his yearly scoliosis screening this week at Shriners.  The good news there is he's stable.  There's an error margin of about 4% and last year he measured at 44% and this year at 42%.  Now, you don't get to go backwards, but at least it isn't worse, which is amazing because once someone reaches at 28% curve, it's like a stack of dominos that just fall over.  So yay for a good report.

And now to see if I can match my attitude to his.

Attitude is a little thing that makes a big difference.

-Winston Churchill

In the Midst of Affliction

Two weeks ago, as I was trying to work through some things in the space between my ears, we sang, "The Lord is My Shepherd" in church.  The third verse reached out and (gently) knocked me upside the head.  (I don't recognize subtle directions very well.)

I've had a hard time lately, trying to process some things.  The long and short of it is, had Aaron been born today, or even in the last couple of years, his treatment plan would have been very different.  What was "not done" at the time, what was "too risky" for children with T18 is becoming standard practice now.

That's hard.  Really hard.  There are a few doctors doing complicated (and successful!) procedures now that were completely unheard of then.  The one he needed was actually pretty simple, but it is not an option now and hasn't been for several years.  His health just won't allow it.

Please don't misunderstand.  I am thrilled for these families.  Beyond grateful for the help they're getting. I just wish it could help us.  But the thing is, part of the reason the doctors are willing to take these chances are because of kids like Aaron, some of them because of Aaron directly.

Because in spite of all the statistics and odds and medical school training, some of our kids live, and thrive, and love life.  He's a pioneer.  But like the pioneers, he won't get to enjoy the nice smooth road that will be built alongside the rutted, muddy, bone jarring trail that he traversed.

And then there are other challenges.  Challenges that aren't Aaron's, and aren't mine to share.  But heartaches and struggles that I deal with as well.  Some temporary, like a distance separation from loved ones, and some much longer lasting.  But painful all the same.

But that line, "in the midst of affliction" doesn't end there.  It goes on, "my table is spread. With blessings unmeasured my cup runneth o'er.  With perfume and oil thou anointest my head. Oh what shall I ask of thy providence more?"

And with that gentle slap, or forceful nudge (whichever you choose), I actually struggled at first to find those blessings and perfume and table.  But you know what?  They're there.  And once I started looking, they became obvious, and comforting, and soul reassuring.

I have a wonderful son who in spite of all the odds, is still alive and happy and sassy and a nut.  I have a team of doctors who listen to me and work with me to explore options.








I live in a beautiful place.  A hike with friends to the poppies that overlook our valley.  Family and friends who are there with listening ears and prayers.  Grown kids who will drop everything to support family.








A granddaughter is on the way and her anatomy scan looks perfect.  A soon to be daughter-in-law who is amazing.





I have a home, a neighborhood, an online medical community with ideas and support and words of wisdom.  A friend that goes walking with me (talk about great therapy!).  Music,  Books to get lost in.  My bed.  The list goes on and on.

Yes, blessings unmeasured and unmeasurable.

He's nine.  Nine years old.  3312 days.  79,488 hours.  When you spend 17 weeks praying for just an hour with your child, to receive this much...  Well, there really aren't words.

My cup runneth over.  And it's a pretty big cup.

The Lord is my shepherd; I shall not want.

He maketh me to lie down in green pastures: he leadeth me beside the still waters.

He restoreth my soul: he leadeth me in the paths of righteousness for his name’s sake.

Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.

Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over.

Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord for ever.

Psalm 23