Recap and Thoughts

This is John. Today was a very emotional day for me and I’m struggling to find the right words . . . but that’s not uncommon, right? Many of you are used to my rambling, but I hope I can express at least a few clear facts before I get too personal.

So according to plan, we began to wean Eddie off his ECMO flow around 4:00am. Sarah and I arrived around 7:30am while the surgeons, attendings, and cardiologists were conferencing. At this point, Eddie was sitting at approximately 60 cc/min flow, down from 110 the night before.

In the meantime, one of our cardiologists left the conference and stopped by to put hands on Eddie, to get a more personal look at how he was doing before making a final recommendation. I can’t describe how much this small visit meant . . . not just because he was focusing on our son, Eddie, the boy of flesh, blood, bones, and malfunctioning heart muscle . . . but because he took such unique care in preparing for his examination.

If you’ve been in a hospital lately, you’ll know that very few people actually “scrub in” with soap and water anymore. Rather, a healthy dose of hand sanitizer seems to do the trick and is probably totally appropriate. However, this doctor not only took the time to scrub in the old-fashioned way, but also thoroughly sanitized his stethoscope with alcohol . . . something I’ve not often seen. This was a simple act and probably just unconscious habit, but it made the examination much more intimate . . . definitely respectful and gracious . . . demonstrating a level of reverence I didn’t expect.

As the rest of the doctors gathered around Eddie’s bed, it was clear we would need to open the ICU doors all the way to allow for the many nurses and specialists that were needed in case the trial went wrong . . . not to mention the many people who were simply anxious to find out if Eddie would respond as we hoped. It all happened so quickly. The ECMO nurse began to dial down the flow . . . to 50 . . . 40 . . . 30 . . . and then suddenly it was off and the circuit was clamped. It all happened so fast and the room was absolutely silent, with all eyes fixated on the overhead screen. Heartbeat, EKG, blood pressure, atrial pressure, oxygen saturation . . . some numbers advancing, others retreating . . . I thought it felt a bit like watching the stock market . . . or a casino . . . just waiting to see where the wheel would stop.

However, this wasn’t Wall Street or Las Vegas . . . not a speculative exercise at all, but also not free of serious risks. Everyone had taken abundant precautions should Eddie need help . . . I’ll never forget the image of 15-20 syringes at the foot of Eddie’s bed, ready to inject him with a cocktail of dopamine, fentanyl, and whatever other frighteningly labeled drugs were deemed necessary. The ECMO nurse was ready to unclamp and resume blood flow. But the miracle was that Eddie seemed ok. While everyone was watching the screen, I looked at his little chest . . . saw it rise and fall peacefully . . . seeing no outward change. He was calm (definitely sedated) and seemed completely unfazed by the fact that the machine that had been supporting him almost entirely for the past six days was now turned off. Minutes went by and soon everyone was breathing again . . . there were even a few smiles . . . tears for us.

Now it would be wonderful to say that Eddie responded perfectly . . . but he didn’t. His heart performed fabulously with his left ventricle showing significantly improved function since Saturday. However, he also began showing quite a lot of blood in his urine and his core and toe temperatures dipped more than we would have liked. After watching him for a few hours completely off ECMO support, the motley crew of doctors, surgeons, and cardiologists once again huddled in a corner and sent a brave attending to give us the word . . . that we were going to restart ECMO support and try again Wednesday.

While in some ways disappointing, we believe this is actually the right decision. Overall, Eddie performed very well, but there are still a few questions about whether he would be able to support himself if we took him off ECMO today. Giving him two more days will allow his heart to rest and potentially strengthen. The ECMO circuit is still clot-free so we should be able to get another few days use before it would need to be changed. If Eddie trials successfully or shows little to no improvement, we’ll go ahead and take him off ECMO Wednesday. If he performs worse, then we’ll need to go back to discussing a VAD (Berlin Heart) . . . an option we are now optimistic we can avoid.

So after all of the drama in the morning, the afternoon was remarkably uneventful. Sarah went home to be with the kids and I made a nuisance of myself in the cafeteria. I can feel a follow-up post coming on, but it will have to wait until another time because it is so late. But I can say with some confidence that a heart patient’s father should never take to the cafeteria a book to read that contains first-person narratives of children living with heart disease. In case that was too cryptic, I’ll be clear: I bawled my eyes out when I began to read My Heart vs. the Real World and I'm sure there were a lot of sympathy stares in my direction :-). I am only beginning to imagine the pain these children suffer along with their families, but was even more touched by the tenacity and grace with which these kids cling to life. (FYI, the embedded video on the site is awesome . . . just be warned there is some colorful language).

It’s definitely time for bed, but wanted to share one quote from Patty Folgar, one of the kids from the book. She was diagnosed with hypertrophic cardiomyopathy at age 10. She had two siblings, a brother and a sister, who were undiagnosed until they died . . . both at age 10. At 18, she was asked to talk about how living with heart disease had affected her and I think her words are beautiful:

I thought at first that it was just bad luck having heart disease and I used to wish I didn’t have it. I wished I could just run around like everyone else, just doing everything other kids were doing . . . I guess I considered them lucky. But I don’t see it that way anymore. A healthy person might think “I’m so healthy, I’m never going to die, and I can do whatever I want.” And people don’t appreciate the things they have. If you just appreciate what you have every single day then . . . You never know what’s going to happen to you the next hour or minute. You could just – sorry to say this – but just drop dead. And then what if you didn’t enjoy the day you just had, or say “I love you, Mom.” What if you didn’t get the chance? I guess I consider myself lucky.