10 March 2012

Der Himmel über Berlin

Interesting statistic of the day. There are currently 13 patients in the Cardiac ICU and 7.5 nurses (I don't know what a half a nurse looks like, but I'm glad he/she isn't in Eddie's room!) Since Eddie has two dedicated nurses, that means there are 5.5 to cover the remaining 12 patients. So while I suppose Eddie's nurse-to-patient coverage ratio means he is one of the needier patients, I like to think it also means he's one of the cutest. All of the nurses have fallen for him . . . especially his thin blond hair. Who wouldn't?

During rounds this morning, there was some discussion about Eddie's good progress . . . his increased pulsatility, healthy lungs, and improved right ventricle function. Unfortunately, based on today's ECHO, his left ventricle continued to be significantly depressed. Our cardiologist and the attending physician agreed to decrease the ECMO blood flow slightly to test Eddie's response. Ideally, reducing his reliance on ECMO would generate some additional stress on his heart and could trigger increased function. So far the jury is still out. At first, his heart rate dropped lower and his hands/feet cooled noticeably (signs that his heart wasn't responding with as much strength as we would like), but later this evening his heart rate was back up to previous levels and his extremities (fingers/toes) were warming up. They will continue to decrease flows gradually through the night so we'll wait until morning to see how he has handled.

We had a conference with the Berlin Heart coordinator today and plan to meet with Dr. Cohen on Monday to discuss. In a nutshell, Seattle Children's has implanted eight Berlin Hearts in the past six years so Eddie would be number nine. Believe it or not, this is one of the higher numbers in the country since prior to December 2011, the device wasn't formally approved by the FDA. A couple tricky aspects to this procedure . . . Eddie will probably need to be inactivated on the transplant wait list while he recovers from his implantation surgery. Considering that the alternative is to stay on ECMO while the clock ticks and run the risk of end organ failure, a couple weeks of delay would be a small price to pay.

Speaking of price, the coordinator said the cost of the device can run anywhere between $50,000 and $120,000, but she was also quick to point out that Seattle Children's will never turn anyone away based on their ability to pay. Thank you, Microsoft, for one last year of 100% coverage!

So as things stand today, our best option is that a donor heart becomes available before we implant the Berlin Heart. This eliminates the need for two major open heart surgeries and reduces the risk of anything going wrong in the operating room. Our next best option is to transition to a Berlin Heart for the remainder of Eddie's wait (probably a matter of weeks) which buys us critical time until transplant. Until just a few years ago, Eddie wouldn't have had any option other than to remain on ECMO. If a heart didn't materialize, he probably wouldn't have made it since his current heart function simply isn't strong enough to circulate blood effectively.

I thought this diagram was good for showing how the Berlin Heart works. FYI, it appears likely Eddie will only need one pump (for the left ventricle) since his right ventricle appears to be functioning relatively well. So based on the diagram, Eddie's pump would manage the process as defined in steps 5 and 6. His body is healthy enough to take care of steps 1-4.


  1. Great update! As they have all been. Many YouTube videos on Berlin and other experiences people have had help understanding. I still have a hard time thinking of Eddie being so encumbered. So Grateful for the Technology that exist and the hope that can be drawn.

    So Glad to Remember Eddies seeing THOMAS on Skype. That is a great memory. We love all of you so much, maybe we should have Isaac make a blog on kids activities while this is going on!

    Love Dad

  2. As always, thanks so much for the daily blog updates. You guys are doing great and there are so many people concerned for you and praying for you. I'm guessing you can figure that out though by the number of visitors you have had on this blog!