Friday, September 27, 2013

ECMO 1 year anniversary

Today marks one year since Caelen coded after his Fontan and went on ECMO  (heart/lung bypass machine) for life support.  This was by far the scariest day of our lives.  I've never shared photos before of Caelen on ECMO because even I didn't want to relive what had happened.  But one year later, I'm glad that I have the photos to see how far Caelen has come since those very dark hours.  Fair Warning, these pictures are hard to look at, so I don't blame you if you want to skip over them.

The first picture is of Caelen once he was on ECMO and cannulated through his neck, hence the scar on his jugular that some have noticed.  The second photo I hate, but I remember one of the medical team insisting we take the photo because I was so scared that Caelen was not going to come back from the OR.  Looking back, I'm glad she took the picture.  It shows just how scared Martin and I were, and the hell that we had all been through in the last 12 hours.  And the last photo was once Caelen had come back from the OR and cath lab, and the ECMO cannula had been moved out of his neck and into his chest.

And now here we are exactly one year later.  Caelen has traveled to Florida twice, even flying down one of the trips to be a ring bearer in my sister's wedding.  One year ago today, the future was scary.  We didn't know if Caelen even had a future.  And now he's running around the house, singing and dancing to country music, playing cars on the floor, couch, walls and any surface he can find.  He loves to go in the pool, ride his bikes and ride our dog Brid.  Caelen loves to give kisses and hugs, and is a great snuggler.  He's funny and smart as a whip, which gets him into trouble quite a bit.

Yes, one year ago these are all of the activities and traits that I couldn't fathom.  But by the Grace of God, Caelen's amazing medical team, and all of you that prayed for us and with us, we get to celebrate the miracle that is Caelen.  

Caelen and I were recently asked by our heart friend Troy Rice to help raise funds for the American Heart Association's Palm Beach Heart Walk tomorrow.  And seeing what a difference a year makes, we want to ensure that future generations of children, like Caelen, have the opportunity to live heart healthy lives.  Please help us make a difference in the lives of children with heart disease.  Congenital Heart Disease kills twice as many children every year as cancer. 

Please click the link below to make a donation, even $5 makes a difference.  

And a huge heartfelt Thank You to all that have already donated for Caelen and Troy.  We've more than surpassed our goal and it shows me just how much you all love Caelen.  Thank you :)

With much love and gratitude to all who have walked this path with us and helped get us here today,

Katye & Caelen


  1. Wow, what a year! Caelen is a miracle. Thank you so much for sharing those photos.

  2. God Bless your Family, you sure have had rough ride. It is just great to see Caelen doing well again!!