27 March 2012


A genuinely quiet day for the most part. Eddie was very responsive this morning and seemed to have recovered very well from the previous day's surgery. He loved reading The Three Little Rigs and Olivia Saves the Circus, but then again, who doesn't love reading about precocious pigs that fill in for circus performers when they "get sick with ear infections"?

Biggest bummer of the day was that Eddie was asleep when the Speech folks came around so he didn't get his swallow test, so yet another day he'll have to wait for apple juice. Hang in there, Eddie! They'll be back again tomorrow . . .

Overall, the doctors are still trying to get a handle on how to balance his anticoagulation needs (to avoid clotting and potential for stroke) with his risk of bleeding. We have to keep his blood thin enough to prevent clotting as it passes through the tubing of his artificial heart. Basically, blood wants to coagulate the minute it touches a foreign surface and, in Eddie's case, this would be extremely dangerous since they could make their way to his brain causing a stroke. As a result, we and the nurses spend a lot of time monitoring his pump for fibrin buildup as well as watching his general behavior for signs of impairment. So far so good!

I found a very poignant New York Times article from a few years ago which outlines some of the specific issues we have dealt with and continue to face now that Eddie is on an artificial heart. The paragraph below is from that article and describes almost exactly what Eddie is confronting:

All patients with mechanical heart pumps face risks; the greatest are linked to bleeding, clots and infection. Whenever blood flows through foreign materials and artificial valves and chambers like the ones in a heart pump, it tends to form clots, which can be disabling or fatal if they reach the brain. Drugs can prevent clots, but also increase the risk of bleeding, and so doses must be fine-tuned to keep a patient on the thin line between two potential disasters.

Sarah's doing bedside duty tonight so be sure to include her in your nighttime prayers :-) Not easy to get a good night's rest on those old vinyl couches. I love you, Sarah!


  1. Sarah you are definitely in my prayers! Good night to you all!

  2. 'The sweetest love stories of all time are those carried out not on the silver screen but in the furnace of affliction.' You two are wonderful and inspiring. I hope you get to move back into the honeymoon suite upstairs again very soon. Can't even imagine all of the issues you encounter everyday with Eddie's medications and all. May the respite last. Love from all of us!

  3. I have been thinking about all of you and especially Eddie. Please give him a special little hug and squeeze from me! God is watching over all of you! You are in my thoughts and prayers all the time as you venture through this difficult journey.

    -Anna Marie

  4. Hi, I wrote once but nothing appeared...... I try again... I write from Italy and I'm straight near you. My Emma is waitig for a new heart too. She was on ECMO for more then 45 days, a really long period as you know, now are about 3 weeks of Berlin Heart. I't is 2 months I pray for Emma and all the children waiting for a transplant all around the world, so I praied for Eddie too, even if i didn't kwow him!I wanna say you that I'll continue to pray for Eddie and his family, and I'll stay near you all with my heart. I know what is goin' on with you, only a few people can understand what we are livin'. Fortunately most people have no idea. No idea of what happens in children's hospital, no idea of what happens in Cardiac Surgery Intensive Therapy, no idea of how many children are suffering and ding from cardiac patology. And we have the fortune to live in "rich" country and have hospitals and doctors... the most part of children in the world is not so "lucky" as ours,maybe you have ti pay money in the US or have insurance, we have all for free in Italy thanking God!We pay taxes all month,but have almost all for free when we need. I give you all a big hug with all my heart. We'll wait together, we,'ll pray together, we'll hope together. Our babies are stronger than we are....Love you all,I'll be straight near to you , really, Maria

    1. Grazie mille, Maria . . . it is wonderful to hear from you and I only wish our families could meet in person. My wife and I were in Italy last Oct/Nov . . . before we knew about our son's diagnosis . . . it seems like another world now. We hope to return again soon and it would be wonderful to meet you and your wonderful daughter!

      Please know that Emma is in our thoughts and prayers. It sounds like she has so much in common with our Eddie . . . they will definitely need to get to know each other once they receive their new hearts!

      Teniamoci in contatto . . . abbracci!