Free An Uncomplicated Life by Paul Daugherty

notebook on November 28 . “Must find new one.”
    We fed Jillian with a syringe, a specific amount of cc’s. Most babies take a 4-ounce bottle. Our baby took 25 cc’s. From a syringe.
    At 2:15 p.m. on November 28, four days after Jillian had been admitted and three days after the aerosol remedy had been unleashed, a doctor came to Jillian’s room and said the wheezing was still obvious and the aerosol treatments had not been effective.
    The number of hospital people coming around increased, and the chief resident talked about putting Jillian in intensive care. Two cardiologists studied her and determined that the treatment she was undergoing wouldn’t affect her heart, even though the hole hadn’t closed completely. Another doctor told Kerry she could feed Jillian, but she had to be careful that Jillian didn’t choke on the formula.
    At 8:15 p.m., one of the nurses found a worthy vein in Jillian’s arm and started a line of something called theophylline to treat the wheezing.
    I wondered how much more I could take. I was done watching my daughter get jabbed and punctured and aerosoled. I had had enough of listening to the oxygen monitor andobserving the pinched, grave faces of doctors and the patronizing half smiles of the well-meaning nurses. There is no joy in a hospital room—only white knuckles. Jillian’s room had acquired an air of patient desperation: We’re going to keep trying things. We hope they will work. But at a certain point, we’ll have to consider more extreme options.
    I wondered where all the mercy was in the world—and why none of it had been visited upon my little girl.
    Meantime, another doctor arrived to tell us that among the possible side effects of the drug contained in the aerosol were bacterial pneumonia, apnea, hypotension, conjunctivitis. And there was also ventilator dependence. Some doctor or another had mentioned the possibility of brain damage should Jillian become ventilator dependent.
11/30, 5 a.m. Tried to feed her. She wasn’t interested.
5:45 a.m. Dr. Strait said her wheezing was a little worse.
    With each piece of bad news, each beep of an overactive monitor, each vision of what might happen if things didn’t improve, a bit of me took flight. I thought, a man can die without ever leaving the earth. Spiritually, in increments. Each night, I’d leave the hospital in a nether state of disbelief and sadness. In times such as that, you really do say, “This is all a dream, and I am going to wake up a more generous man, grateful for the everyday glory of what I have.”
    Only this wasn’t a dream—so we trudged through the bright, antiseptic halls of Children’s Hospital, its walls decorated with crayon pictures of happy kids and their happy families. We’d go home and fall into a brittle sleep, exhausted toour bones, too exhausted to feel. Then we’d do it all again the next day.
    Kerry was better about it. She achieved a sort of compromised peace by taking voracious notes. She wrote down the times when she fed Jillian, when Jillian took an aerosol treatment, when her blood was drawn and when another IV was inserted. Kerry took down the names of all the drugs Jillian got, every doctor who visited, and what they said. This kept her occupied and made her feel useful. It also kept the doctors informed and on task.
    Sometime around our sixth day into this purgatory trip, Kerry’s stoicism snapped. Two bad experiences caused her to lose her composure. The first occurred when nurses tried to give Jillian the wrong medicine. Kerry had asked all of the nurses and doctors to tell her what each medication was, what it was for and how often it was used. As a result, she was pretty knowledgeable about what Jillian was being treated with. Then on this day, Kerry saw a nurse attach to the IV line something not on the list in the notebook.
    “She doesn’t get that,” Kerry said.
    “Yes, Mrs. Daugherty, she does. Don’t worry,” the nurse said.
    Kerry insisted a doctor be