18 April 2012

Hemodynamics and Eddie

As mentioned previously, the most difficult element of Eddie's treatment at this stage is the hemodynamic balancing act that keeps both bleeding and clot development to a minimum. Clearly, it would seem impossible to have both (or neither, as we would prefer), but it's not always that simple as was evident in this episode from two weeks ago where we did have increased bloody output combined with cardiac blood clots.

Yesterday evening, we noted once again that Eddie's chest tube output was decreasing (sign of clotting) and the output seemed bloodier. His central venous pressure (CVP) was also climbing. At the same time, we saw his Berlin Heart filling much better than previously so, as usual, there were counterbalancing issues at play.

Around midnight, his chest tube stopped draining altogether and another ECHO was called for to see if, once again, we were going to find pericardial effusion and another trip to the OR. Eddie wasn't showing the same outward signs of distress as in previous episodes (mottled skin color, poor perfusion, etc.) so we weren't sure what to expect. Luckily the ECHO showed little to no fluid buildup and we decided to watch him closely overnight and then make more concrete care decisions in the morning.

During today's rounds, and after a couple overnight adjustments to Eddie's Heparin dose, we again had to acknowledge that data-driven hematological models were going to be woefully inadequate for explaining Eddie's responses to treatment. Of course we will continue to run all the standard hematological labs, but for making treatment decisions, we would need to focus on old-fashioned hands-on observation.

In the late morning, Eddie's chest tube began draining again very slowly. This was good news for two reasons: 1) it proved the chest tube was still patent (open), and 2) it seemed that drainage volumes could finally be actually declining. Four weeks after implanting the Berlin Heart, it could be that he wouldn't need a chest tube for much longer . . . a hope we're trying not to get too attached to since we know how quickly things can change.

Most encouraging right now is the fact that Eddie is eating and drinking fairly consistently. He is most interested in drinking water and milk (goodbye apple juice?) and eating Cheez-Its, SweetTarts, M&Ms, mashed potatoes, and Ritz crackers with cheese. Hey, gotta do what you gotta do to get this boy to eat!

Behaviorally, Eddie is doing better every day. Smiles are much easier to come by and he loves playing with his stuffed animals, puppets, and other toys. We took him for another walk around the unit today (in his wheelchair) and I think he looks less fragile that he did last week. Our nutritionist is single-minded in her quest to fatten Eddie up!


  1. Thanks again John & Sarah for the update. All of us are on edge till we see the posts so we do appreciate them... So glad that Eddie is eating and drinking. Chest tubes aside we are grateful for his very strong spirit and all of your endurance. I so glad you have help and love at home with Whitney and Courtney to help out. We Love You All. Dad

  2. Looks like pretzels were just the tip of the iceberg! So glad to hear the eating and drinking continues. Also grateful that he is doing so well with the Berlin heart. He is in each prayer around here.
    Tiffany & Tore