After all that surgery talk, this seems like an appropriate time to talk about ECMO.
ECMO stands for extracorporal membrane oxygenation - basically an exterior heart and lungs. Only a few hospitals in Virginia have trained teams and adequate machines to run ECMO. We learned a lot about it because there had to be someone in Jacks room 24 hours a day to monitor/run the machine. Like for bathroom breaks or lunch breaks - they had another trained ECMO person come and sit in the room while they took a break. We met almost every ECMO worker (a few didn’t do peds) and we talked with them a ton. They were present for many hard conversations with doctors, surgeons, nurses, chaplains, etc. They did things like get us lunch when the free lunch carts rolled by, bring us honey from home, update us on medical rounds that we missed. They felt like a second family. We wrote down almost all the nurses and ECMO techs Jack had - we wrote down 15 names for ECMO and I know we missed a few (like the night shift ones) but I think the team is only about 20 people so met almost all of them.
ECMO is literally the last resort medically. It is rare and you don’t want to use it but you are grateful it exists if you do. They told us about the longest adult ECMO runs, the Covid cases on ECMO, the prospective heart or lung transplants on ECMO, and a variety of wild and hard things they’ve seen in their collective years.
ECMO is complicated to say the least. My layman’s terms description is this: the blood is pumped out of the body through a bunch of plastic tubing to an external “lung” and heart and back into the other side of the heart. Your blood doesn’t like interacting with all that plastic over a long period of time. It causes hemolysis and clots and the ECMO tech is constantly checking all of the tubing for any tiny piece of fibrin (I think - aka blood clot particle) in the the tubing or the external heart or lung. The oxygenator and tubing would occasionally have to be changed out due to clot build up and this would cause a jump in hemolysis as blood interacted with new plastic. He would get transfusion of plasma and packed red blood cells throughout the day (like 3-10 times a day). They got blood gases hourly I think. The tech is also watching flow rates and the baby’s heart rate and oxygen monitor, and basically just everything. That much responsibility would crush me after 10 min. They did 8-12 hour shifts. Insane.
Because Jack was on ECMO and the machine takes up so much room, he was in a shared corner room that had another bed/isolette in the room. We had countless roommates. The first was another little boy who had the Norwood procedure (the first of the three palliative surgeries for HLHS) the day before Jacks surgery. We watched him get his chest tube out, then extubated a few days later (removing the breathing tube), then moved out of the PICU to a lower level of care. Another baby came and went briefly. We watched a little baby girl code, machines beeping that terrible awful beep that gives you PTSD, the medical response team flooded in, we watched as a general surgeon started prepping her for a central line to get access to start ECMO before we were shued out of the room. I don’t remember how many roommates Jack had in his 4 weeks in the PICU but I do remember that every time one of them got better and moved out, more and more bitterness bubbled up in me. Occasionally it burst out in tears and terse words.
The ECMO team witnessed all of it too.
Most of the ECMO team were extremely kind. Some did it because they were a junky for advanced critical care and nerded out over this stuff and even do research on it when they’re not working. Some of the team had this calm and quiet intelligence that gave us a ton of reassurance. All of them made us grateful to know they were there all night with Jack, even when the nurse stepped out, they were there.
We went in late one night for some reason and met his nighttime ECMO guy and his bedside nurse that we hadn’t met before. They were oohing and ahhing over Jack before we even walked in his room. They had already made his bed all perfectly (they change the blanket underneath daily and it’s a big ordeal because of all the wires and tubes). They combed his silvery hair and told us how much they loved it. They made us so extremely grateful for their care and just proud to be the parents of a tiny human worthy of such spoiling.
I’ll get to nurses more later. But the ECMO team is full of absolute gems.
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