Heading to the 617!

I’m so excited right now that I’m literally shaking as I write this.  We just got the call from our cardiologist telling us that the team in Boston sees no reason why they cannot do a 2-ventricle repair on Ellie.  Praise God!!  I can’t begin to tell you how great this news is.  Is it still open heart surgery?  Yep.  Is it still terrifying?  Absolultely.  Is it the best hope we’ve heard from doctors yet?  You bet.  Dr. Loche (head of cardiology at Boston Children’s) said that he has full faith that they’ll be able to do a 2-ventricle repair on Ellie this summer.  We don’t have a solid timeline yet, but I think we will soon.  It’ll be this summer, though.  They plan to repair her ventricular septum and patch her atrial septum in a way that will allow her right ventricle to grow to the size it needs to be.  They’ll also remove the PA band and any scar tissue associated with that in the same surgical procedure. 

This couldn’t have come at a better time, really.  Ellie’s been having a little trouble since Friday keeping her O2 sats up.  She does beautifully as she sleeps, but when she’s awake and active, her lips, eyes, and fingertips get dusky… sometimes blue or purple.  She is not tolerating the humid weather, either.  We’ve already had to kick in the a/c for her (I can’t say I mind, either).  We have an impromptu cardiology appointment tomorrow (we weren’t supposed to go in until the 20^th) so that they can do another echo on her to see how she’s doing.  These are signs that they warned us of with her pulmonary artery band… signs that she’s growing out of it.  The only way to adjust it is with surgery… so if we’re going in anyhow, I would prefer to get out to Boston to go in for both procedures at once.  Right now, Ellie’s still a very happy little girl, but she’s starting to show these signs and you can see in her eyes that she’s fighting… that she’s just so exhausted just being awake.  I’m ready to get her to Boston and get her heart repaired… but also scared out of my mind of such a big procedure on her.  This is just something I have to trust The Almighty with!

This is all the update I have right now – I’ll update you more after our appointment tomorrow and obviously as we hear any timeline from Boston.  Celebrations, my friends!!  Thank you for your love and support… and mostly for your prayers for our sweet Bug!  Love you all.