The last thing you want to wake up to at 3:15 AM is a bright room crowded with doctors and nurses swarming over your child, to another mass of nurses and doctors standing in the doorway and hall, all gazing intently at the monitors above your child's bed.
There is nothing like the look on a nurse’s face as she shakes you awake and says, “We need you to wait in the hall.” There is nothing like the overlapping, relentless beeps coming from countless sensors that are all screaming the same information: SOMETHING TERRIBLE IS HAPPENING TO YOUR BABY.
You stand in the hall, blinking yourself awake, and watch the bent backs of the medical team as orders are shouted back and forth and even more people come sprinting into your child’s room lugging equipment in emergency-orange cases.
By now you’re shaking so hard you can barely pace in a straight line—and then suddenly someone has put a soda (maybe for the sugar?) in your hand, which you can’t steady enough to bring to your face. And now a new sensation comes on, an adrenaline surge spiking a metallic taste through your tongue.
Now someone has set you down in a chair and a doctor in a white coat is asking you if you want to call your wife. In fact, no, the last thing you want to do is call your wife because what she will hear on the other end of the line—your quaking voice—will scare her even more than the phrase “cardiac arrest.”
And then, it’s just … over. The beeping returns to a steady, reassuring rhythm. The layers of doctors and nurses begin to peel away and wander back to their stations and departments.
Later, you will learn that this entire event lasted about six minutes, but every sensation will feel as if it unfolded over hours.
The doctors will clarify that your child’s heart didn’t stop but that, for a time, there was no pulse. The term “bradying” will be repeated several times and, later, when you can finally steady your fingers on your laptop keyboard, Google will tell you that it’s the verb tense of bradycardia, or low heart rate, which typically doesn’t elicit symptoms until it dips below 50 bpm.
By now your child is taken off the hard CPR board and rewrapped in blankets. Someone tells you that there doesn't seem to have been any damage to the new liver or any other organs. ("Wait," you think, "that was a possibility?") Soon the lights are dimmed again and everything is as it was four hours ago when you fell asleep to whatever you were watching on Netflix.
The RNs return to their discussion of who’s going to take their breaks when. This is the absurd life of a nurse. One minute they’re debating the merits of Chipotle’s burritos and the next they’re running off to snatch someone from the brink of death.
You call your wife and tell her what has happened. Should she come to the hospital? Who knows. It’s late. It takes an hour, minimum, to get here from Brooklyn. The danger seems over. Everyone is exhausted. So back to sleep it is.
After you hang up you will stand at the bedside and stroke your child’s head and, eventually, roll back onto your own convertible bed. You will fail to sleep. And for the next few days you will not be able to stop hearing the beeping monitors everywhere you go—on the subway, in your office as you try to respond to the work emails that are piling up, in your own bed at home. They are always with you.
Families of the sick measure time in days—good days (when you get a smile) and bad days (when there’s more fluid in the lungs). Most are a mix.
If you’re being honest, there has been much more good than bad. But the bad ones have a way of sticking with you, haunting the back of your mind every time you step away from your child's hospital bed to get something to eat or use the bathroom or head home or to work.
The key to survival is to remember that every day is just that: a day. There will be others filled with joy, disappointment and everything in between. The journey of a transplant recipient is a long one, requiring and rewarding patience. By focusing on each day as it comes, everything becomes surmountable.
As the old riddle goes: How do you eat a whale? One bite at a time.