It appears likely that Eddie will need yet another Berlin pump since the fibrin deposits have grown larger and they appear to be darkening. We've sent photos to the Berlin Heart folks to get their assessment, but there is little doubt we'll need to move forward with a pump change.
Similar to last time, Eddie will be intubated and anesthetized during the entire procedure. Unlike his previous episode, however, the doctors are comfortable doing the change at bedside rather than taking him to the OR.
For those that weren't following the blog back in late March, you can read about Eddie's first pump change here and here. We hope everything goes as smoothly this time as well.
If everything goes as planned, we'll start the procedure around 11am PDT. Will send any updates prior and will definitely post a follow-up status after we're done.
Adding image of the developing clot so you can visualize what we're talking about.
Eddie's chest tube stopped draining this morning and his morning ECHO showed another pocket of fluid building up in the pericardium. Most likely a clot has developed inside his chest blocking the drain, and he'll be going back into the operating room in about an hour. This is essentially the same operation he underwent last Tuesday and Thursday . . . but at least he doesn't have any clots in his heart this time . . the potential clot blocking his chest tube is in the pericardial sac rather than the heart itself.
Update to follow after Eddie is safely back in our arms.
"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.
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 . . .
Good morning, everyone. I know many of you have been waiting patiently for an update, so here's what we know:
Yesterday's ECHO didn't show much of a change in Eddie's clots . . . still roughly the same size and in roughly the same place. This is good since we know they are still in his heart and haven't migrated somewhere more dangerous. Also, since clots tend to establish themselves more firmly over time, there is the possibility they will become more embedded and less mobile which, in the near term, may be a good thing since they don't seem to be obstructing blood flow through his heart. We will continue to monitor his clots through daily ECHOs.
We scheduled a care conference yesterday afternoon with Eddie's doctors to understand where things stood and get a comprehensive picture of his care options going forward. The net result was that we felt it best to take a watch-and-wait approach rather than take any interventional steps (surgery, specialized anti-clotting drugs). With constant monitoring and a bit of finger crossing, we would hope for the best.
Not long after the care conference, however, the team approached us and said they needed to take Eddie back to the operating room since the bleeding from his chest tube was increasing and was increasingly bloody. After much discussion with colleagues around the world, the doctors and surgeons felt it was getting to the point that we had to take the risks of surgery to identify the source of bleeding and try to stop it. This was around 6:00p last night.
About three hours later, we received word that Eddie was stable and recovering nicely. They had found one artery that was bleeding a bit, but mostly there was diffused and general bleeding and it was difficult to pinpoint the source. They closed him back up with the hope that the bleeding would slow down, but there was no smoking gun.
As of this morning, he is still intubated (on the ventilator with breathing tube) and he is still bleeding. He is awake and responding to us and we are so grateful to have him with us. We will have a more detailed discussion with the doctors in the next hour and will share news as we have it.
As you can tell, Eddie is very critical. We love him, and are so proud of his strength . . . he inspires us every day with his tenacity. Thank you for your prayers . . . we feel them every day.
