15 March 2012

To Be a Pioneer

Another quick update to let everyone know Eddie's surgery was successful. The actual cannulation only took 30 minutes or so and they were able to place the tubes in the same location (neck) since the artery and vein were still viable . . . all good news.

So here's the plan for now . . . Eddie will stay on ECMO until Monday at the earliest to give a few days for his lungs to clear up. At that point, if his lungs are strong, we'll make plans to transition to a Berlin Heart later in the week. If his lungs aren't 100% yet, we'll stay on ECMO and hope that a few more days will help. Since the Berlin Heart is purely a pumping device and doesn't do anything for the lungs, it is critical that Eddie's lungs are completely healthy before implantation.

During our physician conference today we discovered that only 30 restrictive cardiomyopathy patients in the world have had a Berlin Heart implanted so our team is essentially casting the mold with Eddie. With virtually no literature on the subject, this is more art than science . . . and our hope is that whatever our team learns from Eddie they can apply to help other patients in the future. Way to be a pioneer, Eddie!


  1. Good to hear it went well. Guess even 3 year olds can be pioneers! Hope you guys can be a little more rested this weekend. We continue to think of you often and keep you in our prayers.

  2. What a tough little guy! So glad to hear the surgery went well. We will continue to keep you all in our prayers!

  3. Thanks so much for the updates John, we really appreciate them. You, Sarah, Eddie and all the kids are on our thoughts all the time. So glad to hear that all went well today!

  4. So So Glad that I didn't go to bed before checking for an update... So Grateful to YOU JOHN and SARAH for keeping us up on whats going on. I really don't understand how you are doing it. We're all praying for Eddie and You All... So Grateful for the Drs & Staff, for taking care of Eddie. We Love You All. THANK YOU> Thank You, THANK YOU ALL!


  5. John & Sarah, I often don't know what to say and I usually don't understand all the medical talk but I want you to know that I read all your posts and have kept up on Eddie's progress. . . what an amazing little boy you have! Heavenly Father is surely working His miracles through him. I hope beyond hope that you two are holding up through all of this & that you can feel the Lord's peace when nothing else seems to make sense. I too have shed many tears for you as I feel so sad that you must go through this. I know that you will manage it beautifully though because that's the kind of woman you are, Sarah. I send all of you, including your other children too, my dearest love and biggest hopes. . . Cathie