Another good day with Eddie out of bed quite a bit. Still not ready to test out his legs, but happy to test drive his "cheesy" smile.
As most of you will remember, it was three weeks ago today that Eddie got out of bed the first time. Wonderful photos and lots of enthusiasm. Then Sunday happened . . . and was followed by ten excruciating days of uncertainty, three open chest surgeries, and most importantly, an amazing recovery.
Needless to say, we are cautiously optimistic about the week ahead for Eddie.
Gastronomically speaking, he's pretty attached to milk, water, and fruit roll-ups right now. The milkshakes, waffles, chocolate cake, and other "high lipid content" foods we're pushing at him get the cold shoulder. Not surprising, really, considering that he's being infused with a pretty high-calorie mystery cocktail through his NG tube. Bon appétit, Eddie.
Also some photos of our brief expedition to Seattle Center for the opening day of Next50. My Microsoft colleagues will recognize our gnomish friend making guest appearances all around the city.
And finally, April 21st can't go by without wishing our friends in the UK and Commonwealth nations felicitous birthday celebrations for the lovely Elizabeth Alexandra Mary Windsor. Happy 86th!
Another day, another open chest surgery. In case you've lost count, this is number four in three weeks (and number three in the past week). He came back after a couple hours and is stable...intubated...sedated...and not bleeding.
Starting tomorrow, we'll need to restrategize and it will probably involve not running Heparin and monitoring his Berlin Heart extremely closely for clots. Changing out a pump from time to time is preferable to cracking Eddie's chest over and over again.
We're all very tired but grateful he's back in our hands.
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 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.
