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!

Auf Wiedersehen, Berlin

It's hard to believe any three year-old could go through as much as our Eddie has, but here we are. As we speak, he's back in the OR and our surgeons plan to remove his Berlin heart. His bleeding continued for most of the morning and then suddenly slowed . . . his ECHO showed new pericardial effusion which obviously wasn't draining. So either his chest tube was blocked or he was developing pockets of fluid unreachable by the existing drain.

The plan is to open his chest and see if by chance there is any evidence of a single source of bleeding (highly unlikely since he was just in the OR on Tuesday and there was no evidence then). Assuming there will be no obvious bleeding source, they'll drain all the fluid they can and then close his chest. At that point, the Berlin pump will be disconnected and then replaced with a modified ECMO circuit. Since Eddie's right ventricle and lungs are working well, there will be no need for the oxygenation functionality of ECMO (the lung) so it will just be a closed circuit from the left ventricle to the centrifugal pump to the aorta.

A couple of the key benefits of this approach will be to eliminate the Berlin (to which Eddie seems to have some kind of inflammatory response) and stop the Heparin infusions Eddie currently needs to keep his pump clot free. Without the Heparin, his clotting function should improve and slow the bleeding. However, this also means he will be at risk of developing new clots in his heart, but this is a risk we are more comfortable taking . . . especially because we think the clots only formed in the first place because of his constricted heart during his tamponade on Sunday . . . an episode we hope to avoid in the future.

One piece of (apparent) good news is that the clots in the left ventricle seem to have vanished since yesterday. Nothing catastrophic has happened so we assume the clot dissolved . . . or ended up somewhere harmless.

Will share more details as we have them . . .