Wednesday, October 19, 2016


A touch of whimsy up here.  This giant pumpkin is sitting
outside the main entrance.  It is HUGE (that's a pallet underneath it)
 and just  look at all the detail in the carving. 
 We're still here, still hanging out in ol' room 3058, on the J pod, in the Children's Surgical Unit. And I think we're both getting a little tired of the scenery.

But once again, last night, he had a weird bump.  And given that his cold isn't supposed to peak until tonight, we decided to play it safe and stick around one more night.  Frankly, if he decides that he'd much rather have the PICU ventilator than his old boring one, I want to be a short elevator ride away from it, not a 45 minute ambulance trip.  By tomorrow morning, we should have a change of scenery.  It will either be home (yay!) or the PICU.  Honestly, my money's on home, but you're never quite sure with this kid.

So anyway about the TALK.  Anyone with a medically compromised kid knows about this one.  And well, if your child wasn't supposed to live at all, you know, "incompatible with life," you've probably had it more than once.

Dad and big brothers came for a visit on Monday.
I hate it.  Let's just get that out there.  I know it's necessary.  They wouldn't be doing their job if they didn't make sure we parents understand reality.  It is what it is, and there is no way around the ugliness.  So for those who might be wondering what all it entails in Aaron's case, I'll put it out there for you.  And then, until the time comes that I truly have to face it, I'm shoving it back in the deepest, darkest corner of my mind and nailing the door shut.

But here's what this visit has brought:

There are only a few different pulmonary hypertensive medications.  Oxygen is first line of defense, and he's been on that since birth.  Then there's sildenafil (liquid Viagra).  He started that at about four months old.  Three years ago they added a drug called Bosenten.  That's an interesting one.  There is no actual clinical data for pediatric patients, meaning no dosing recommendations whatsoever for people under the age of 12.  And it is known to sometimes cause liver issues, really bad ones. But when your option is the drug or death, well....  'nough said.  He takes it.

Biggest grins I've seen in a while.
This time we've started something called Ventavis (iloprost).  That was the subject of most of the recent posts, like this one, this one, and this one.  But here's the issue.  This is the last one.  There are no more.  We are out of options.  All the others are some sort of variation on these.

Pulmonary hypertension is considered progressive and non-reversable.  And he's already quite compromised because of his trach and ventilator.  This is the ugly truth.  What does it mean for Aaron?  I'm not sure exactly.  Each of his other meds have bought him about three years time.  There are studies which show really, really good results with the combination of bosenten and iloprost.  But of course, there are no studies, none at all, with pediatric patients, let alone peds with Trisomy 18.

And he has full Trisomy 18.  And he is trached and ventilator and oxygen dependent.  And he is a boy.  Yes, that does make a big difference.  The time is coming when we will have to make really hard decisions, decisions no parent should ever have to make.  But that time is not yet here.  And I refuse to face it until it is.

What can't  be measured is the songs he sings, the smiles and giggles, his mischievous nature when he teases us.  You can't size up the joy that he brings and the lessons he teaches us.  You can't calibrate how much love we've learned from him.

So we will bury him.  It will be awful, beyond description, more than anything we've had to bear.  But to avoid that pain, we would have missed out on all the beauty.  There's already enough anticipatory grief.  And maybe not enough anticipatory hope. Today, I chose hope.

"God puts rainbows in the clouds so that each of us — in the dreariest and most dreaded moments — can see a possibility of hope." 
~Maya Angelou


  1. I don't know what to say. It all feels inadequate. I love you.

  2. I glad you and your family have chosen hope. Stressful but full of LOVE. And what a blessing he is. Hang in there momma. You got this. Julye