My son, Daniel, is a plump, barrel-chested little guy with many drastic-sounding diagnoses: severe spastic quadriplegia (aka cerebral palsy), developmental delays (mental retardation), cortical visual impairment (blindness). None of them is fatal. But there was a day in spring when, waiting at a stoplight with him strapped into his car seat behind me, I burst into tears, thinking of the cats and chickens that could regulate their body temperature better than he could.
In his early months he'd gotten legendary fevers, off the end of the thermometer, but his normal temperature was low, in the 94-to-95-degree range. At the stoplight I suddenly saw the futility of trying to externally control a delicate biological system that was, let's face it, careening madly off course. I foresaw our inevitable defeat. "He can't last. He can't last," I sobbed to the red light. Daniel was 9 months old.
But he grew, and so did his problems: pneumonia on the Fourth of July, pneumonia at Thanksgiving. A surgery near Valentine's Day was supposed to end the pneumonias by tightening the entrance to his stomach, where everyone thought food was leaking into his lungs. It didn't work -- the pneumonias came more frequently. Worse, the geography of his digestive tract was now foreign to him, so that he could no longer manage swallowing, and we were forced to feed him through a tube attached to a porthole into his stomach.
Soon we had a suction machine for keeping his nose and throat clear of mucus, since he had no enthusiasm for coughing. Next came a nebulizer machine for breathing treatments, a pulse oximeter to beep a warning when his heart rate inexplicably slowed, an oxygen compressor for when the pulse ox showed his O2 saturation was down. Each new machine replaced something Daniel ought to have been doing on his own, another function his withered brain should have been managing.
Despite all that, despite a year's downward slide since the sobbing at the stoplight, I wasn't prepared for Easter and the ICU doctor who, seeing Daniel struggle for breath, asked if we wanted to sign a DNR (do not resuscitate) order. It was a shock, a nightmare. It seemed almost obscene. Of course not. What are you thinking, you punk with a medical degree? How could you say that?
Looking back, I see that the doctor's question was like a Morse-code message that turns an ocean liner around. The ship changes course, but not at once. We struggled through a respiratory virus on Labor Day, Halloween in the E.R. and many other hospitalizations. Each time, Daniel withstood needles and suction catheters. He bled and puked on hospital sheets. Eventually he didn't even cry when they poked him four, five, six times to start his I.V.
I began having terrible dreams of cruelty. When they raised the hospital bed to do a procedure, I saw an altar lifting a small human sacrifice.
It took until after Christmas for the ship to complete its turning. On the last day of that year, my husband and I met with some doctors, talked, cried and signed the DNR. It no longer seemed obscene; it seemed rational, intellectual even, a measured response to a measureless problem. Daniel was two-and-a-half.
I had thought you'd sign a DNR for a child when you were in absolute despair about his life, had given up hope and were waiting for the earliest opportunity to usher him out of this world. Turns out a DNR is a stern admonition to the medical professionals: This small set of tortures will not be performed. It comes after you've made the painful, the crushing realization that he's going to die no matter what they do. So it's not really despair -- it's that "tiger mother protecting her cub" thing. The writing I read on the wall said, "The help can turn to hurt. Look to it, Mother."
The DNR we signed dictates that the patient will not receive four things: chest compressions, electric shocks to the heart, certain heart-prodding medicines and intubation (putting in a breathing tube). Door No. 4 is Daniel's. Our doctors, now honorable and wise and friendly, assured us that a breathing tube would be not only painful and ugly but also subtly dangerous.
Little kids like Daniel, whose more than 20 pneumonias have caused permanent lung damage, catch cold and end up in the ICU. In these cases they are usually working so hard to breathe that the help from the ventilator finally lets them concentrate on something else, like moving or eating. So they quickly become dependent and you end up with Karen Ann Quinlan: Do we stop the medical intervention and probably end his life? Or do we let him go on like that in a miserable, diminished state? The doctors tell us it's best to ensure we'll never have to face these questions. We believe them.
Living with a child when you've signed a DNR order for him is an exercise in disciplined ambivalence. We believe he is going to die -- and we believe in the miracle of recovery. Every day we believe both of those things as we cycle through his tube feedings and breathing treatments and thump him on the chest to loosen the phlegm.
It's hard for friends to understand why, with the DNR in place, we continue to take Daniel to the hospital when he's sick. To me, that's like asking why someone with a last will and testament continues to go to work every day.
Still, sometimes I watch Daniel sleeping, his long lashes and pale skin, the smell of his hair like no one else's hair. He is a precious child. Do you understand? He is precious, and what we've done is a ghastly failure and a sin.
But then he gets sick, we rush him to the hospital, they take him away, they bring him back with the blood only partially wiped off. I've learned how to pick him up without pulling at or pinching the oxygen tubing, the I.V. line or the pulse-ox cable. He lies exhausted in my arms, his head lolling back. I hold him close to my heart and wonder what all of this is for. Is it for him, or is it for me?
The question seems truly hypothetical in light of Daniel's grim prognosis. Still not past even the very first hurdles of infant development, he's like a 31-pound newborn baby. He does not sit up; he does not smile. His disability is so potent that he has few peers and no guideposts. I think of him as our own private E.T.: His thoughts and language are a mystery, but he came to live with us and we do our best to care for him. It's like being entrusted with an endangered species or a rare breed of orchid.
If it were possible for Daniel to reply, I would ask him what he thinks about the needles and the hospital stays. Instead I am guided by his lone measurable personality trait: stubbornness. Wheel him up to a table and he'll clumsily, doggedly reach for a spoon and, if he's lucky, drag it into his lap. We clap and cheer, replace the spoon, and he goes at it again. Straddle a bolster with him and without fail he'll haul up his heavy head, bobbing and dipping. Put him on his stomach and he'll try to crawl, dragging his oxygen line and his punitive plastic leg braces with him. He never gets more than 2 inches, but he never lets that bother him. E.T.? Hothouse flower? Hell no, this kid is a Tonka truck. You cannot stop him.
Who am I to think of stopping him?
None of this is hard proof, of course, of his intentions. And neither is this next thing, though to me it's our best piece of evidence: Daniel is good at not dying. More than once in the ICU and in the special, hushed hospital room for terminal cases, he has confounded expectations. It's not an easy thing to do, and he is a child.
And so I follow this child, humbly.
Meanwhile, I'm exhausted. The DNR, like a petulant suitor, continually requires more and better proof of our fidelity. We refine and explain our wishes against startling new conditions. We must decide over and over again. The young radiologist, for example, who was about to do a lumbar puncture on Daniel, told us that we'd have to rescind the DNR for the duration of the procedure. When we asked why, he gave a little insouciant, teenagerish shrug and said, "Because otherwise we won't do it."
Or the pulmonologist, who wants to do a bronchoscopy to get a sample of the probable bug down in Daniel's lungs. She told us that some patients get in trouble after the procedure and have to be "tubed." So the questions are: Do we even want the bronchoscopy? If we do, do we want to temporarily remove the DNR just for that procedure? If we don't, could we handle it if the procedure "hastened his demise"? It's as if before we were playing rugby and now suddenly we're playing chess.
My husband does not want Daniel intubated under any circumstances. He is strong and brave. I am bad at chess and am moving sideways and crablike, on delicate pincers, into dreams and messages. I close my eyes and ask Daniel if he has pain; I see a swelling red heart and a blue cloak falling over it. I ask if he wants to take his leave of us; I see a woman looking back at a child running out from under her outstretched arm. I cannot analyze these things with my customary tools, so I wait for inspiration and sustenance.
What I get is church-basement casseroles and unwashed laundry, which are actually quite sustaining, if not inspiring.
The no-nonsense psychologist whom I talk to more and more these days says Daniel will let us know when he's ready to give up. So far Daniel hasn't once let us know when he's cold, or full, or unhappy, so I accept this with trepidation and longing. I accept it, though I'm scared to death I'll miss his signal in the haze of tubes and beeping machines. I accept it because I've already made the decisions I'm allowed to make. Daniel himself will have to make the next one.
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