Monday, June 18, 2012

Our Crooked Little Man

I haven't yet written about Wiggle's heart cath appt. on June 5th.  It was a day full of mixed emotions and one that was exhausting both mentally and physically.  Wiggle had a great team of nurses, doctors, child life specialists, etc.  That was all very reassuring for me!  The cardio that performed the procedure was really great, and I was very comfortable with much so, that we will start taking Wiggle to see him now instead of having to drive so far to his other doctor.  So.....the long and the short of it all....
Wiggle's heart is wired funny.  His coronary arteries are both misshapen and his left one is particularly large.  His right coronary artery isn't even in the right spot and doesn't connect where it should.  It should be on the right side of his heart, and should connect to his right atrium.  His connects to his right pulmonary artery.  So his body has this weird whirlpool of blood going on, and has created all of these collateral blood vessels to adapt to the problem.  Because of Wiggle's funky plumbing...his left ventricle is dilated or too large.  But the good thing, is that he has good heart function and while his blood pressure is a little high...this works for him.  (That's why when we put him on Enalapril, it knocked him for a lowered his blood pressure and took the wind out of his sails, because his heart thrives on the little bit of high blood pressure he has going on.  So, the really GREAT news is that there is no reason to list him for a heart transplant right now.  The doc said that he will see us a month from the cath. appt. for an echo, and then probably every 6 months after that, to monitor his heart really well.  He said that he could have blocked off the pathway where the heart is pumping blood to the pulmonary artery, but that could cause a potential coronary heart attack and we don't want that.  So that's why he left it alone.  He has also put him on 1 baby aspirin everyday, to ward off a coronary heart attack too...because of his funky shaped coronaries.  If, at some point, he sees a reason to do something surgically (say, because his heart continues to dilate further), then he'll do that.  If it continues to dilate and surgery doesn't help or isn't an option...that's when he'd be listed for a heart transplant.

  So... he continues to be our "Crooked Little Boy" (based on the little nursery rhyme), or our broken little boy... because his little body does things it's own way!  For's working okay.

1 comment:

  1. Hi

    My name is Jenna. Your kids are a brave courageous fighter. your kids are a special miracle from god, a gift from above, earthly angel,and your kids are a smilen hero. Your kids are full of happiness, life, smiles, joy, fun,love, and spunk.

    I was born with a rare life threatening disease, and have 14 other medical conditions, and developmental delays.

    I wrote this poem
    Each of us are Special
    Each of us different,
    No one is the same
    Each of are us are unique in our own way,
    Those of us who have challenges, we smile through our day.
    Those who of us who have challenges, we smile through our day.
    It doesn't matter what others say
    we are special anyway.
    What is forty feet and sings? the school chior