Heart Ache

Last week we handed Jackson over and let them shove cameras down his throat, and a drill up his nose, all in an effort to gain some knowledge that would help him.  Information the doctors could use to fix his troubles.  Wisdom to understand why he throws up every morning.  Pieces to the puzzle of why, 10 months post Glenn, he's still on oxygen.  And what did we gain?  We gained a vest that will shake our child.  Wow.  Seriously?!?!?  I'm in a bit of a fowl mood about last week.

I'm an envious green headed monster.  I have heart momma's with heart kids running circles around Jackson.  They aren't on oxygen and their sats stay in the 80's.  They are having their feeding tubes pulled.  They are up and moving.  Well meaning friends who ask if Jackson is walking yet are like a knife to my back.  Their genuine questions sting like a thousand bees.  I am tired and frustrated and burnt out and scared.

Adel wants to have a cath this spring.

I can sense another "big picture" talk coming.  And now that Chris is back to work, I will likely face that conversation by myself.  Fuck.

Jackson isn't a "thriving" Glenn, and deep down we all know it.  Adel has been patient.  We've all been patient.  But at what point do we start asking those uncomfortable questions?  I have searched for a post Fontan CHARGE kid.  And I haven't found one.  I've found a few CHARGE kids who made it through their Glenn, but aren't Fontan candidates.  They are 4 and 5 and 6 years old, and are just sorta struggling to hold their own, much like Jackson.

It makes me wonder if the other CHARGE kids got heart (and maybe also lung) transplants?  Adel has said that we might fight an up hill battle to get Jackson on a transplant list.  And while I can understand that, is it fair to refuse to him a heart just because he's not in tip top shape?  And please don't mis-understand me, I am not ready to give up on Jackson's heart and jump on the transplant band wagon just yet.  Transplants are scary and come with their own list of issues and meds and worries.  They aren't perfect.  You trade one set of life long problems for another.  But, I don't like the idea of it being outside his reach either.

What I do know is that pre Glenn, when his half a heart was doing a whole heart's job, he wasn't on diuretics.  He wasn't on inhalers.  He wasn't on heart meds.  Yes was tired and he slept a lot.  He was blue.  His oxygen levels weren't fantastic, but he wasn't attached to an oxygen concentrator 24/7.

What I also know is that post Glenn, he's happier.  He's more interactive.  He lights up when Mason walks into the room.  He has fight and spunk and spirit in him.

Do we have enough forward progress to keep going?  Are we just torturing him (and us) by prolonging the inevitable - whatever that may be?

The doctors told us that being a single ventricle patient was a hard road.  Add in his CHARGE and there are days it seems too daunting of a task to give to a sweet 16 month old boy.  My heart aches for him.  It aches with worry and fear that we're making the wrong choices.  It aches from sleepless nights spent with feeding tubes.  It aches from grief over the healthy son we were supposed to have.  It aches with envy.  It aches from feeling alone on this journey.  It aches from frustration that I have no control, no say, no magic wand.  It just plain aches.