13 March 2012

New News

So today was supposed to be a rest day for Eddie before clamping off ECMO again tomorrow. However, after this morning's x-ray, it became clear that his venous cannula was dangerously high and would need to be addressed one way or the other. Since re-establishing him on ECMO after repositioning the cannula carries significant risks, we began to discuss taking him off ECMO entirely rather than waiting for tomorrow.

So about an hour ago we turned off the machine and Eddie has been doing all of his own work. In spite of a period of junctional rhythm (not good) during the trial off, he has recovered and is in good sinus rhythm with good heart rate and blood pressure. We are going to watch him for the hour or so to see how well he does before the surgeons come in to remove the cannula.

Most likely, his vein is going to be in pretty bad shape since the cannula has been in place for a week and he has been a very "active" patient. The surgeons will try to repair the vein, but it's possible they won't be able to suture it and will need to creatively close the vein.

Once again, we are on a roller coaster ride and every day brings new surprises. If all goes well, this could be a great step for Eddie . . . his body and heart will certainly let us know what he needs. If he struggles, there are a variety of options available to us from implanting the VAD (Berlin Heart) to recannulizing via his femoral artery, but we'll cross those bridges when we get to them.


  1. So happy for the update.... Hang in there EDDIE! all of us are praying for you! John thanks for being the calm in this big storm.... so sorry that we are so far away, so glad that you have each other to rely on. We love you so much ....Dad

  2. Good luck with your new day. Lots of prayers going out your way. We love you guys.

  3. Thanks for all of the updates. Why torture yourself anymore by reading such books? ;) Know you are constantly in our thoughts and prayers. Wish we could be there to give you and Sarah and all the kids a squeeze.

  4. What an amazing and strong little boy you have! I had a very wise clinical instructor tell me never to assess a monitor or lab result before assessing the patient. I loved the image of everyone watching the monitor and you looking down at his chest rising and falling. I also appreciated what you wrote about your doctor the other day, so glad that Eddie is being well cared for. Many prayers for Eddie, your family, and all who are working with him today. -Jill