When I’m not at the hospital, I pine for the smell of Matthew. Newborns have a smell that is as fresh as fruit and as mammalian as a dog’s. The smell is pleasant in direct proportion to how clean they are. One hot afternoon in a car seat and a baby can ripen like an old water bottle with protein smoothie. I’ve been sitting by his side for most of the last hour watching him sleep. Twice, I’ve opened his isolette to get a whiff of him. Despite the faint smells put off by all the medical equipment, that aggressively sterile air that occupies an incubator, I can still discern that inimitable newborn scent. It’s rose petals and dreams, talc and mother’s milk.
I’ve still not held my son. Here we are, more than three weeks since his birth and I didn’t even hold him long enough to pass him from the obstetrician to the neonatologist. The best I’ve managed so far was one afternoon late last week when his nurse turned him on his side and I was able to rub his back. It was the largest patch of his bare skin I’ve been able to caress. Those lazy afternoons of shirtless naps with his older brother Philip when he was an infant seem less memory than fantasy, like I borrowed a memory from someone else who told the story so well I imagined it into my own life.
I’ve been watching him sleep, studying him, trying to memorize him. Tonight my wife and I will take a phone call from the head of pediatric surgery for Kaiser in Southern California. We are going to decide tonight whether we are willing to allow this doctor to perform surgery on our son.
I’m studying my son because I want to know him. I’m studying my son because I’m afraid of the surgery. I’m studying my son because of that clichéd “if something happens.” I’m studying my son now, so that if we lose him, I might better remember him.
Our doctors have come to the conclusion that the Deuce needs surgery, that the best outcome for him is if they perform a ligation of his thoracic duct. The prospect of someone cutting open my three-week-old son scares my like no Stephen King novel ever could.
I don’t feel like we have as full a set of data as would help any of us make this decision. Certainly, I don’t know enough to feel good about the decision, and by “good” I mean confident that this is absolutely what we should do. The amount of fluid draining from him has been both significant and fluctuating wildly. Three days ago he drained 59ml, the next day 67ml and then yesterday 40ml. The fluctuation dispenses hope like an empty vending machine.
Our doctors—Matthew’s doctor’s—are willing to allow us to wait, to see if the effusion decreases. No one knows what to expect. The head of our neonatal unit says that prior to the Deuce, he’d seen maybe a dozen cases of chylothorax effusion. Yet even as they are willing to allow us to wait, they say their advice would be to operate now. Kaiser’s best neonatal surgeon will be in Downey today and he’s not available very often, as in no one knows when he will next be at this hospital to do non-emergency surgery.
Which brings up an interesting point regarding the Deuce. His case, because he is stable, is considered non-emergency. Even though were we to remove him from his isolette he would die in a matter of hours, his situation isn’t an emergency because he doesn’t need the surgery immediately in order to survive. This surgeon may not return to this hospital for weeks, we’re told.
I peppered a different doctor with my questions regarding how we should evaluate Matthew’s current state, the long gap in data, the potential harm leaving all that fluid in him for so long, his chances with the surgery and without. I made the point, “For us to grant consent, we need a clear picture of how he’s doing and I don’t believe we have that. How do we get it?”
The doctor capitulated and said we should talk to the surgeon. He left and when he returned a few minutes later he said the surgeon would call us later that day, some time after 5:00.
The call never came.
My friends in project management and startups like to talk about “the critical path.” For those unfamiliar with the term, it’s the real world’s answer to the crux move in climbing, the hors categorie climb in a Tour de France stage. What these doctors don’t seem to appreciate is that we—our consent—is their critical path. If they give us bad information, incomplete information or ignore us, they don’t get consent.
While I can’t say if they’ve been giving us the soft-sell or not, we’re able to count and every doctor we’ve talked to at this point thinks surgery is a good idea. That detail brought me around to a point of willingness, willingness to discuss the surgery.
Weighing on this is what my wife told me a nurse said of the surgeon in question. She said, “Melinda thinks he’s amazing. She said he has ‘magic hands.’”
I’m in a space where I know I would benefit from a ride. I don’t feel like I can go hard, but I am aware that there’s considerable steam in the boiler, that I need to blow some of it out of my system. Yet I’m concerned that what I need to do is pull on cotton, not Lycra and head to the hospital and see if I can’t talk to this surgeon. Emotionally, I’m still not ready for the surgery, but they’ve put this fear of availability into where I tremble at the thought that The Who might not come to my town on their next tour.