"It's like losing a wing at 35,000 feet, landing the airplane, and then calling it a great flight."
That was the analogy given to us this morning by the Director of Cardiac ICU about Eddie's operation yesterday. He was referring specifically to the release of the clot in his right ventricle on the operating table and the resulting pulmonary embolism (PE). We are just now getting the complete story of what happened and it appears the clot definitely did dislodge during the procedure and, with its significant size, should have been fatal. In fact, the same doctor told us he's never seen anything like it . . . the PE should have been "game, set, and match" for Eddie.
As you'd expect, this morning's rounds were about as celebratory as they get with an ICU staff. Eddie had virtually no bleeding overnight, and what little there was, was overwhelmingly serous. His blood pressure, after being elevated yesterday, dropped to normal levels. Lungs are clear, kidneys doing great, no pericardial effusion, no clots in the heart or Berlin pump, no fever, and as of a couple hours ago, no breathing tube. Lest we all get carried away with good news, he continues to have irregular heart rhythms so we are increasing his potassium levels and may need to put him back on amiodarone. No matter which way we slice it, however, we can't deny that we're thrilled with his progress and it's nothing short of remarkable.
Eddie's having a good morning and we're hoping to let him recover a bit from the craziness of the past few days. As I write, he's enjoying Sarah's dramatic interpretation of Horton Hears a Who!
We plan to leave the Heparin off today to limit any bleeding, but will watch his pump very carefully and will ECHO him this afternoon to make sure no clots are forming. If all goes well, we'll probably turn the Heparin back on tomorrow. As the ICU staff told us, this is definitely not a path they would ever follow for another patient (meaning actively turning off anti-coagulation treatment on an external heart pump), but as is clear, Eddie is a different kind of patient.
We are very conscious of the fact that any of these events (or numerous others) could happen again at any time and put Eddie in danger. However, we are celebrating the fact that he is with us today and know that he is being watched over.
As Eddie was preparing to go to the OR, we told him the surgeons were going to take away his "other" heart. He gave us a funny look, screwing up his eyebrows, as if to tell us he didn't think that was such a good idea. As it turns out, he had the last laugh since he just came back to his room still attached to his Berlin heart!
So a couple surprises to note. First, after exploring with the transesophegeal ECHO, there were no signs of either left or right ventricular blood clots. We believe the LV clots dissolved or otherwise left the heart last night or this morning with no noticeable effect. The RV clot was clearly there during this morning's ECHO so we think it may have dislodged during today's procedure. But most importantly, there is no evidence of the kind of pulmonary distress associated with a pulmonary embolism.
Second, and perplexingly, we still found no bleeding in the pericardium. Since Eddie's bleeding seemed to have stopped about two hours before surgery (we thought it was probably due to a clot in his chest tube), Dr. Cohen was inclined to trust his eyes and leave good enough alone. That means the Berlin stays in place and we'll wait to see if the bleeding eventually stops.
Since the clots have disappeared, we're more comfortable turning off the Heparin for a couple days which should help the bleeding slow down. If we can get the bleeding to stop, then we'll turn the Heparin back on which should keep the Berlin pump clean. Regardless, we're back to playing the "wait and see" game and it's far too early to declare any definitive victory . . .
Sarah and I were treated to a bonus once Eddie came back to the room. Typically the nurses ask us to leave while they change his Berlin dressings (both for sterility reasons as well as some parents have been known to faint), but they thought it was about time we saw what they do each day. Neither of us fainted, but we can assure you it's not a sight for the "faint of heart" (pun intended). The combination of his ECMO and heart surgery incisions, two Berlin heart cannulae sites and two chest drainage tubes would have brought a smile to Victor Frankenstein's face.
So that's it . . . we'll keep the (non-alcoholic) champagne corked for now :-), but will celebrate each small victory as we find them.
