Friday, April 20, 2012

Reality Is Just No Fun

I think there's a reason why fantasy and other fictions are such popular genres.  As my daughter is fond of saying, "The difference between fiction and reality is that fiction has to make sense."  This morning, reality was thrust at me again.  I prefer my fantasies.  The fantasies that include Aaron getting bigger and stronger, going to school, laughing with not only his brothers and sisters, but even nieces and nephews.  This morning I was reminded that all is not necessarily as I would like to see it.

See, this is a teaching hospital, and nothing was said that I hadn't already known, but to have it brought out into the open was, again, a little more eye-opening that I really wanted it to be.  The attending was asking leading questions trying to help the residents figure out why Aaron's oxygen needs were so high.  He asked me a couple times during the discussion if I was already aware of this, or if it was news I'd heard before.  Yes, it was. 

So here's the reality I have to face, at least for the time being, until I can bury my head again.  Yes, Aaron's lungs are junky, and he's having trouble.  But there are a lot of kids in the PICU with junky lungs who aren't requiring super-high amounts of oxygen.  Aaron's pulmonary hypertension shows many signs of not being under control.  And pulmonary hypertension is not a good thing, not for the lungs, not for the heart.  And funny, those two organs are kind of pretty important to life.  Uncontrolled, it will cause right-sided heart failure, not maybe, will. 

So he's going to have an echo and then they'll try nitrous oxide to help open his pulmonary arteries.  And we'll really hope that this is a side effect of his cold and that we can find a way to control it.  Because there is no cure for pulmonary hypertension, only ways to help control it. 

On the good side, today he's a happy boy.  He's active and smiling and playing with his toys for the first time since we got here.  And he slept pretty good last night, too.  I just wish his support requirements would go down.


  1. I saw your link on aninchofgray...
    Just wanted you to know I'm praying for you and your little boy...