The nurse asked him where he was and who we were, and Haim still didn’t seem able to answer. Two more nurses and our doctor showed up. By this time I was standing nearly in the hallway. You learn to stay out of the way. “He’s unresponsive,” I heard the doctor say to someone, and then a nurse turned around to tell me we were going to the PICU.
In the PICU I really did stand out in the hallway, watching through the room’s big corridor-side window, as if keeping a couple feet outside of the room would make it impossible for anything too serious to happen inside. I could just barely see part of Haim’s chest through all the nurses’ bodies and medical detritus around him — its rise and fall was almost imperceptible, one of those foci that make you distrust your eyes and the world in front of you. I counted his breaths. In two minutes he’d breathed ten or eleven times, and I stood there thinking which one was it, ten or eleven, ten or eleven, until they went to intubate him and his entire pudgy body began to strain violently, and I stepped back inside.
At one point a screen high above Haim’s bed began beeping and flashing and, as if in concert, the doctor and all of the nurses stopped and looked up at it, in silence, just for a moment. This was his blood pressure skyrocketing. Then they all began doing things with an even more frenetic fervor. I could see the doctor leaning down over Haim’s face, pulling open his eyelids. Haim was having a seizure, I would be told later. The doctor would say later that he’d never seen a child’s pupils so big, as if there were no irises, as if they were not eyes at all.
There are no small emergencies, of course. There are no close calls. For Haim, being alive at all is a close call, a chance escape. This is what this time is now, as I’m sitting here in his room in the PICU watching the sun set over the Thames and the little boats nodding against the pier — a gift of unknown providence, a chance only to escape one kind of waiting for another.
They’ve just a few minutes ago brought back the test results from earlier today; a resident explained them, occasionally glancing up at me and then at Haim’s still, unconscious body, like he might be listening. Haim’s sodium level is now at 123; since it was at 134 earlier in the day, a sudden drop seems to be the key medical clue. The numbers themselves (and all the infinite scales they assemble) are so arbitrary that, even now that I actually understand them, I often imagine, half sleepless, that they should bypass their medical literality (which means nothing to a parent anyway) and reach instead to a description that could approximate the level of emotion the numbers should be communicating. For instance, the resident could have said that the amount of sodium in Haim’s body dropped from the amount of salt one might cup with two child-sized hands to the amount one might cradle in one child-sized palm, and, moreover, that it had not been lost slowly but all at once, as if the hands had been parted unexpectedly, and that Haim lying there now is desperately trying to keep his little damp palmful of salt from blowing away in the bodily winds that are threatening to carry him right out of this room, this night, this tired conversation. A test result like that might mean something to me.
So it is, as the resident explained, actually SIADH that caused the emergency today, that made my son fail to recognize me. SIADH, or Syndrome of Inappropriate Anti-Diuretic Hormone Hypersecretion. They don’t use the real names of these things because they’re ridiculous. Inappropriate hormone secretion, or, as it’s otherwise known, ninth grade, I wanted to say to cheer Haim up, but he’s unconscious, and it’s a lame joke that he will never be old enough to really get anyway.
There’s not much to do now but think about the words, as if breaking them down or playing a kind of sleep-deprived free association might change them into something more logical, something one might understand. In the wake of his morning of medical activity, Haim is now hooked up to an EEG to monitor brain activity, a ventilator, and a catheter, and has an arterial line in his left wrist and a central line in the right side of his groin. He has been given one medicine to seep fluids from his tissues into his veins, and another to make his body rid itself of the excessive fluid through urination. The body, even when it is more plastic tube and chemical molecule than flesh, persists in being a body. Haim is under sedation now, but doing better, and is scheduled, if everything continues to improve, to be extubated tomorrow. I already have a Popsicle ready for him for after they do it, have already stashed it in a small fridge in an empty room two rooms down. It’s purple.
Of course, no one tells you how to feel about this, how much this minor crisis signals our proximity to the larger one, the crisis that is not a crisis, the end. I try to call the number that, through several relaying connections, is supposed to connect me to Charlie, but it only rings again, as it has all day, to no answer.
Diffuse Intrinsic Pontine Glioma. Imagine a morning fog spreading through a dense forest, insinuating itself until its opacity is the very space between the trees, until its wispy presence exists even in the delicate distance between the needles of two overlapping fronds. It is a betrayal of one’s own flesh, growing as it does out of the glial cells, which are the ones in the brain that are supposed to protect your neurons. It is inoperable.
The first time we almost lost Haim (to a bad sepsis that developed around the medical port that had been implanted in his chest) I was still stuck on those words, “pontine” in particular. You read up on everything, at least until the medical labyrinth loses you. You do what you can. The pons is tightly held in the brain’s fist, encased neatly, maddeningly, by the meat of the cerebellum, midbrain, and medulla. It deals with sleep, breathing, swallowing, bladder control, hearing, taste, eye movement, and facial expression/sensation, among other things. The frontal lobe may be the seat of abstract consciousness, but it is the pons that is the seat of the bodily existence, the brain’s brain. Pons means “bridge” in Latin, and its matter bridges many things, like the signals for voluntary action and the motor cortex that allows one to act in the world, or the act of (in the sad, unintentional poetry of the medical textbooks) inspiration and expiration. The pons is there right from the beginning, in the folding of the tube that will be the fetal brain, gathering at seven weeks, just about the time you find it safe enough to tell the world that you are pregnant.
At the time, I could only think of the Ponte Vecchio, which I once saw as a child. It’s impossible to separate what I knew that first time, in the long hours sitting alone by Haim’s bedside in the PICU — not used to the kind of low-grade panic that never quite recedes and compulsively dialing Charlie’s cellphone number to no avail-from what I know now, from all the subsequent Googling, the madcap late-night efforts to draw the connections. A tumor on the pons, full name pons Varolii after Costanzo Varolio, the 16th-century Italian who discovered it and who worked and died in the country of the Ponte Vecchio, where four hundred years later I stood as a boy on a dreary, wet fall night (my own pons at that moment safely coming to the last stages of its development and yet even then containing the very DNA that would recombine with Charlie’s, adding the future groundwork for one tiny disastrous mutation) thinking only of how the bridge’s many vibrantly golden lights leaping in the water made it look like the whole river was on fire. This all in order to somehow, someway understand even a little bit of what it was that was being visited upon my little son.
That was the night the holiday started, that night of the sepsis scare. It was the first of September, Haim had only been sick for about four months, and everything still seemed manageable. Charlie and I spent all day every day at the hospital with Haim, taking turns nights with one of us sleeping on the small foldable cot in his room and the other making the tired walk back to the flat in the cool dark.