Sunday, April 30, 2017

Neverland and Dashed Hopes

Getting excited about his echo
Last January our cardio surprised me with the idea that Aaron might possibly be a candidate for fixing his heart.  Obviously it was not without risk, huge risk, but still, worth considering. 

On Tuesday, hopes were pretty much dashed.  Echos, or ultrasounds of the heart, are used to estimate pulmonary pressures.  You know, the pressure between the heart and lungs.  Aaron's single biggest challenge.  While not exact, his echo looked pretty much like all his recent (meaning last few years) echos. 

So then we looked back at his last heart cath from two years ago.  That gives exact numbers.  And those weren't great.  In fact, as far as surgery options, they were downright bad.  There are some numbers called "wedge" numbers.  If they were to do a heart cath on most of us, ours would be about a 2.  For surgery, they like them to be 5 or less.  Aaron's were between 9.2 and 9.75.  Yeah, not quite within range.

We will do another heart cath in July or August, but they don't expect the numbers to be optimal.  At this point, I think I'll be happy if they're not worse.
Whadda ya mean, I can't "help"? 

I don't know that we would have opted for surgery.  You know, that whole "huge risk" and everything.  Could he survive the first surgery?  Could he handle the lower oxygen sats that it would cause?  Could his lungs relax further so he could have the second?  Could he survive that?  You can see where this is going.

But on the other hand, fixing his VSD would allow him to someday possibly (probably) get rid of his oxygen tanks, and his ventilator.  The freedom that would bring would be incredible!  No longer would we have to measure outings by battery life and tank limits.  I wouldn't have to carry an extra 25 pounds or so of equipment.  He wouldn't have to be tethered to tubes (although he doesn't seem to mind them). 

Having fun at brother's play, "Peter Pan." 
Our own little "lost boy" who will
"never grow up."
In reality, not much has changed.  We've been told for almost 7 years that surgery wasn't an option.  I sometimes wonder if in the beginning it wasn't his heart as much as it was his T18 diagnosis.   I think there was a time when it might have been a possibility.  I know that in his lifetime, doctors at our hospital have argued for and won the case for surgery for others in similar situations.  He's taught some wonderful medical professionals about the possibilities for joy and life and created some powerful advocates. 

But the truth is, he won't be able to benefit himself. 

Years ago, my father flew rescue aircraft with the Air Force in Alaska.  Their squadron motto was "That others may live."  I guess in a way, it might be Aaron's as well. 

“I suppose it's like the ticking crocodile, isn't it?
Time is chasing after all of us.”
― J.M. Barrie


  1. "That others may live." I'm inspired by this. Think how much better the world would be if this were everyone's personal motto. Please thank Aaron, your dad, and yourself for this much-needed dose of hope and light today. xoxo