28 March 2012


You've already seen the bear, but today we introduced him to Eddie . . .

And apparently the experience wiped him out . . . sleep tight, little guy.

Sarah managed to tear herself away from the hospital so I'm back to doing hospital duty. We had a good day today with some small victories and a few things to work on. The Speech team made their much anticipated return visit this morning and Eddie enjoyed 2 or 3 swallows of apple juice and a spoonful of apple sauce before decided he'd had enough. Not surprisingly, he started asking for warm chocolate (his version of hot chocolate) as soon as he saw his door of opportunity open a crack . . .

His Berlin pump hasn't been filling as well lately which generated a lot of discussion at rounds this morning. He is showing very strong signs of cardiac activity (warm toes, strong pulse, good color) which is good, but not necessarily what you would expect if the pump isn't filling. A lot of conversation as well about the quantity and quality of output from his chest tube . . . very bloody in appearance but very low hematocrit levels. If he was bleeding internally, we would expect to see much higher hematocrit levels . . . more comparable to his regular blood draws.

So Eddie continues "to boldly go" where few heart patients have gone before and our seasoned cardiologists and attending ICU doctors are at times left to "figure it out" through trial and error. Sounds scary, but really understandable since they are face-to-face with something they haven't seen before. In fact, while I can't speak for Sarah, I actually find these conversations fascinating and encouraging because you're seeing the decision-making process happen from start to finish . . . the scientific method in action. Some hypotheses are proven correct and others . . . not so much. But in every case, we have multiple doctors and nurses bringing hundreds of years of combined experience to the conversation. Difficult to arrive at consensus, but usually reaching a decision that everyone feels is the best way forward.


  1. John, great to see Eddie responding. As always, enjoy reading your meticulous blog updates. The hallway does feel empty with the lights out in your office but I can live with that.....you take care!!

  2. That smile is awesome to see!

  3. Hi Eddie,Hi jhon and Sarah, Hi to everybody. Wanna say you that here is the same on this days...It is the first time they used a Berlin Heart in Emma's hospital, they used some other BI-VAD deviced before, but it is the first time with Berlin Heart and so they're tryin' ti understand how to use it well for helping Emma in the right way. I know that they have ask to other doctors around Italy in other important hospita,maybe Rome and Milan I think, that are more "friendly" with it. There are not so many centres in Italy practicing cardiac surgery. We're lucky ve live in north of Italy, 1 hour from one of them. Emma somedays has a good, pink colour, other not,but the first problem now is that she's too full of water in all body expecially in the liver. She has a too big liver and they're tryin' to empty her day by day with Lasix in continuos and pumping more with Berlin Herat..She has the tube for ventilation, and I hope she could take off it early and back to speak, but it seems it would be long and diffuculti after months sleeping, Now she's awake but not so aware and in Intensive Therapy I can't stay with her except from some hours a day, so I know she's alone and that's so sad and hard for me, and expecially for her. She will be 3 years in June. How old is Eddie? Forgive me, I can't read all you wrote for I don't have the time, goin' alla day to the city, go and back, go and back...I have another child aged near 5. And it seems to me that you have other chlidren. Oure children are suffering too for their brother and sister illness. They'll all strong and wonderfull. Hugs from Italy, hugs from my heart. I'm goin' to have a shower and go..!

    1. Hello Maria . . . would love to talk about your experiences over email. Can you email at xibixibi@yahoo.com? Grazie!


    2. Sure John! I have only a few time, but it would be a pleasure for me, Maybe tomorrow night I'll write you!Today I'm busy!God bless you all!!!!!!Give Eddie a kiss from me and another one from Emma!

  4. Everytime I read one of these entries I feel heavy concern, optimism, wonder, and appreciation (for growing medical knowledge and technology). Thank you for sharing so many photos and details. We love your family and pray for Eddie and the rest of you throughout the day. -Carolyn

  5. Dear Harpers,
    Please know we're thinking of you and praying for you all the time. And Eddie is such an extraordinarily courageous little guy. Can certainly tell where he gets that from. Lots of love to you all!
    Kristin Eck