Day 2: Drawing to a Close

Knew I'd need to sit down and start this entry early in the evening (it's 7:50p) since we are pretty exhausted. Eddie continues in stable condition and his irregular heart rhythms are slowly, but steadily improving.

He has been completely sedated all day so no chance to see his smile or feel his little hands squeezing our fingers. That is hard, but we know it is super important for him to be as relaxed as possible while he is on ECMO . . . otherwise he would be pulling at the bypass tubes which would be a problem. While on the subject, I thought it might be helpful to post a diagram of an ECMO setup which is pretty consistent with what is going on in Eddie's case (except he is much more handsome than the kid in the picture below!):

Basically, the blue canula is taking the blood from the body and sending it into a centrifuge (blood pump) which is spinning at roughly 2,000 RPM and sends the still deoxygenated blood to the oxygenator (I know, it sounds like a bad Arnold Schwarzenegger movie). There, the CO2 is removed and oxygen is introduced into the blood simulating Eddie's normal lung function. The now oxygenated blood continues on its way back to Eddie and is pumped throughout his body in support of his weakened heart. All the while, Heparin (anticoagulant) is put into his bloodstream to keep the blood thin enough not to clot in the plastic tubing. There is a full-time nurse (we call her the Nurse of the Pump) who's entire job is to monitor ECMO performance at bedside. If she needs to get a drink or go to the bathroom, she must call another nurse to replace her . . . this is serious stuff.

So what did happen today? Well, we learned a lot and much of it was technical so won't bore you with too many details. Most importantly, we know that Eddie can't stay on ECMO for long (1-2 weeks tops) and our doctors want to take him off by early next week at the latest. Ideally, he will come off ECMO because his own heart recovers enough to take over independently. Realistically, he may need another bridging option to get him to transplant . . . a Berlin Heart. Good video introduction here.

We are just learning about the Berlin Heart, which is basically an assist device rather than a full-blown artificial heart. It is relatively new and was just approved by the FDA for pediatric use a few months ago. While not an ideal option because it requires more surgery and isn't perfectly suited for restrictive patients, it is our best course should a donor heart not come available in the next week.

On the transplant front, since the geographic, size, and blood type criteria have all been loosened, we are cautiously optimistic about finding a suitable match for Eddie in the coming days.

We also received a little more insight into what happened in the ER yesterday when Eddie's heart stopped. I spent time with one of the electrophysiologists today and he let me know that the ICD did indeed fire within milliseconds of the external defibrillator. Our surgeons, who were standing over Eddie when his heart stopped, were quite upset because the ICD wasn't firing when it should have . . . that's why they pulled out the paddles and went to work.

As a result, the electrophysiologist made three changes to Eddie's ICD to ensure the delayed firing doesn't happen again. First, he lowered the beats per minute threshold from 200 to 180 . . . so that the ICD would trigger at a slightly lower heart rate since Eddie tends to peak at lower levels than most children. Second, he reduced the number of beats above 180 required to fire from five to three. To prevent accidental firing, Eddie's heart has to stay above 180 BPM for three consecutive beats . . . it was previously five consecutive beats above 200 BPM. And third, he increased the initial "shock" from three joules to seven. When the ICD was originally implanted, our doctors were very conservative in the settings which seemed appropriate at that point. However, this is a perfect example of how each patient's unique characteristics need to be taken into account when calibrating such a sensitive device. Hopefully we'll never need the ICD again, but we feel better knowing that we've made custom adjustments to match Eddie's specific profile.

Finally, as a special gift, here is Eddie's admittance film from yesterday. Reminds me of the old Sesame Street game where you have to figure out which of the things in the picture don't belong . . . hmmm.