27 May 2012

Our New Normal and Homecoming Thanks

As I read through our earlier posts, it seems strange to be sitting comfortably on our living room couch with Eddie playing on the floor. No sounding alarms, pump changes, IV flushes, or late night drama involving tubes of any kind :-) He is talkative and definitely much larger than ever thanks to consistent overnight feedings and steroids. But most importantly, he seems so happy to be home with his brothers and sisters . . . it is wonderful to have him here.

Eddie is definitely still a child of the hospital with a feeding tube in place and a device called a wound vacuum attached to the largest of his healing Berlin Heart incisions. He receives 13 different medications throughout the day which must be administered at 7:00a, 8:00a, noon, 4:00p, 7:00p, 8:00p, and midnight. Sarah and I also give twice-a-day injections for anti-coagulation therapy . . . no, we haven't left coag levels behind just yet.

So yes, I think it's safe to say we're tired. As we adjust to our "new normal", we are developing some strategies to make things a bit easier on ourselves and Eddie, but I doubt the next few months will ever seem comfortable. Our hats are off to the many of you that have ever taken care of a family member with short- or long-term care needs. You are our heroes (and be warned . . . we may reach out for advice!)

We are so grateful to our many wonderful Duvall friends and neighbors that made Eddie's homecoming unforgettable. Driving into town from the south, we were met with beautiful green ribbons tied to dozens of trees, the Duvall town sign at Big Rock, and light posts along Main Street. Approaching our neighborhood, green ribbons and streamers were blowing for Eddie and he was so excited to know this was all for him and his beautiful donor. What a gift for all of us!

Now, as we drive through town and see new bows, ribbons, streamers, or anything else that looks celebratory, Eddie says "For me!" and I believe he genuinely feels loved. And as if it wasn't enough to see the green ribbons on the street and to see the large "Welcome Home" sign on our garage, Eddie was treated to a King County Fire Department welcome from many of his first responders. It was great to see the smiles on their faces knowing that Eddie was home safely. Thanks for being so prepared and responsive every time we've had to call 911 . . . you were at our door in minutes when every minute counted. We love you!

Will write more later about our Friday clinic visit. Everything went smoothly, but we did have a very memorable visit with an old friend of Eddie's.


  1. Oh the ribbons make me cry! Serena calls them "Eddie Strings."

  2. Christine Coco29 May, 2012 14:27

    My thoughts are with you and your family, John! I hope that Eddie has a smooth recovery process, and where it's not so smooth, I hope that you all grow closer as a family while you navigate the bumps.

    We're all cheering for Eddie here at the office!