11 May 2012


So many updates since Eddie's transplant and no idea where to begin. The past week has been amazing for our family and we are still trying to digest everything that has happened. It's a bit of a dream, really . . . and our entire focus has been on enjoying this very special time with him. We know we'll never have another chance like it . . .

In short, Eddie is making remarkable progress. The first few days after transplantation were difficult since he was intubated, sedated, and had drainage tube-, IV-, and monitor wire- spaghetti all over his bed. Hard to lie in bed comfortably let alone getting out for a stroll.

We were able to take out his breathing tube Friday afternoon, followed by his drainage tubes and nitric oxide on Sunday. Then Monday morning, one of the transplant cardiologists wanted to see how Eddie would respond to a higher heart rate and set his pacemaker to 105 bpm as opposed to his native rate in the high 80s (he is connected to a temporary external pacemaker which we'll remove before he goes home). Almost immediately we saw a difference . . .

Since Monday, he has been talking, singing, playing, and, perhaps most surprisingly, eating. Cheetos, oyster crackers, fruit roll-ups, and cinnamon toast all get the thumbs up. Still turning up his nose to lasagna and broccoli, but we can live with that . . . our goals are modest at this stage :-)

And then the surprise today was to hear that he is ready to leave the ICU. After 66 days and too many ups and downs to count, we're taking down the decorations and packing our bags for the move tomorrow. Going to the surgical floor is a huge step for Eddie, but we won't deny that we're sorely going to miss the Cardiac ICU. They have been spectacular, heroic, and remarkably human(e) in taking care of Eddie. Rather than disassociating (as I feared at the beginning), most of the doctors and nurses invested themselves completely in Eddie's care and were noticeably affected by both his setbacks and successes.

I feel completely unable to do justice to these amazing individuals. We consider many of them to be extended family and look forward to staying in touch as Eddie grows older. What an amazing reward to see a three year-old heart failure patient grow up to be a healthy young adult, knowing all along that you were partly responsible for bringing him to that point.

Susan B. Anthony is credited with saying that "sooner or later we all discover that the important moments in life are not the advertised ones, not the birthdays, the graduations, the weddings, not the great goals achieved. The real milestones are less prepossessing. They come to the door of memory unannounced, stray dogs that amble in, sniff around a bit and simply never leave. Our lives are measured by these."

I think that's probably right. We have countless small but specific examples of doctors/nurses caring for Eddie that will bring tears to our eyes for the rest of our lives. The same goes for family, friends, and neighbors providing innumerable kind acts of service so that we wouldn't collapse under the weight and pain of Eddie's illness.

"It is not so much our friends' help that comforts us as the confident knowledge that they will come to our aid." Well said, Epicurus . . . words as appropriate today as they were 2,300 years ago.

A few photos to enjoy!

Ah, ECMO . . . we've come such a long way. You saved Eddie's life . . . but we're glad to say goodbye

The "Juice" (and Cheetos) Lady
Wonderful physical therapists
First bites . . . yum, dry toast!
Loving doctors and nurses
Birthday treats for the Cardiac ICU
The Man. Eddie's transplant surgeon. Words fail us . . .
Two of our friendly Cardiac ICU attendings
Puppet show

Final rounds in the Cardiac ICU. Hard to say goodbye. We love you.

09 May 2012

Happy Birthday, John...another love letter

First, Eddie.  He slept all night long.  He is sitting up, playing with his trains, talking up a storm.  We look forward to a great day.

Now the short love letter.   It's John's birthday. I love my husband.  John, you have been our stable support throughout this odyssey.  Your ability to process the information coming at us nonstop and help us all understand it has made everything seem just a little more manageable. Thank you for setting aside your work, your sleep, really everything, to see us through.

I love you, John.  Thank you.