An Uncomplicated Life Page 6

  Quickly we realized the problem was that Jillian was not equipped to fight the virus that was creating a mucus that stuck like chewing gum to her impossibly small lungs. The textbook definition of bronchiolitis is “a virus [that] enters your baby’s respiratory system and causes the bronchioles, the smallest airways in the lungs, to become swollen and irritated. Mucus collects in the bronchioles and interferes with the flow of air through the lungs.”

  When a child is deeply ill, the world constricts and becomes a very simple place, settled by fear and defined by the four walls of a hospital room. Life is a narrow tunnel in which there are no choices, no options, no decisions to be made. It’s only you, the tunnel and your child.

  Jillian lay small in her hospital crib at the center of a nest of tubes. She was hooked up to machines that hydrated her, monitored her heart rate and the level of oxygen in her blood. Tubes ran into her chest and abdomen. She had an oxygen monitor attached to her tiny index finger. It was metal and glowed red. Antibiotics dripped into her body. Wires that were held in place by tiny, circular Band-Aids ran from her chest to a monitor on the wall.

  She didn’t know what was going on. She had no idea there was a chance that, if she didn’t respond to the aerosol treatments and if she kept losing weight, she’d be put on a ventilator, and that could cause brain damage.

  We wore masks in the room even though we really didn’t want to. We didn’t want Jillian to be scared. When Kelly came to visit his little sister, he remained in the hall, waving at her from the window.

  The monitors beeped and buzzed. Aural terror. The machine that measured the oxygen concentration in Jillian’s blood was especially horrific. It had a habit of beeping several times an hour, usually after Jillian had shifted in her crib and moved the monitor wires. Each time, a nurse would come in, shut it off and tell us not to worry.

  Kerry got the message. After a day or so, she calmly told a nurse that the “stupid oxygen machine” was going off again.

  I wasn’t able to do that. I couldn’t rein in my fear. Every time the oxygen machine beeped, I reacted as if I’d been stabbed. It was the soundtrack of my despair. I wondered if it would ever stop. I began to see the infernal beeping machine as a metaphor for the rest of our lives.

  We’d been doing okay, coping. The therapies were starting, Jillian was on a schedule of eating, napping, dancing with me and going to bed. Kelly was in preschool. A calming normalcy had returned. After a few months, we wanted nothing more than for the world to stop spinning so fast.

  Kerry kept detailed notes during those first several weeks, handwritten in pencil in a short, spiral notebook. The jottings helped her keep track of what the whir of doctors and therapists were saying. They also slowed down the world. As such, they were therapy, too:

  10/31, Weight, 6 pounds, 6 ounces

  9:30: Dr. Perez, echocardiogram at Children’s Hospital

  1:00: Dr. DeBlasis, two-week checkup, PKV retest

  EKG, Dr. Schwartz. Right side of the heart apparently enlarged. Sonogram needed, to see if opening between right and left side has closed. Small hole between chambers should close by itself. Re-exam in 3 months.

  I took Jillian to the 1:00 p.m. appointment with Dr. Nancy DeBlasis, Jillian’s pediatrician. I was armed with Kerry’s questions:

  Why do there seem to be soft spots all over Jillian’s head?

  What type of Down syndrome does she have?

  Are we feeding her the right amount?

  Why does one eye seem to be lazy?

  Dr. DeBlasis offered reassurance. She was sure the soft spots would close. Jillian has trisomy 21, the most common form of Down syndrome. Jillian was eating properly. We were told to feed her formula every three hours, four ounces at a time. She should gain one ounce a day. The lazy eye was no cause for alarm.

  The doctor noted that Jillian had a small umbilical hernia that should disappear by age five.

  She asked that we bring Jillian back in a week, and Kerry’s hieroglyphics kept us straight about each appointment.

  11/7, Dr. DeBlasis: Weight, 6 pounds, 12 ounces

  Good muscle tone

  Weight gain OK. Check again in two weeks

  Put silver nitrate on belly button to cauterize it. (Not completely closed yet.) Check for any oozing to indicate it’s still not closed.

  See back in two weeks.

  We ordered our days around these notes. They were the blueprint for how we’d begin the lifetime task of building the best Jillian. New, enthusiastic parents want to do everything right. The totally dependent life they’ve created deserves nothing less.

  It was the same with Jillian, only more so because of an extra chromosome. We fretted over feedings and naps and having a consistent bedtime. We kept small objects out of the crib, we laid Jillian on her back when it was time for her to sleep. We had the baby monitor on the dresser.

  We also worried if her tiny ear canals would ever be clear and if her heart ventricles would close voluntarily, or if surgery would be required. We felt her head for the softness where the skull bone had not yet spread.

  Jillian was always congested; her little lungs never welcomed an easy breath. We’d lay her in her crib and listen. Jillian’s breaths were a titanic struggle. They sounded like a wind gust rippling a flag. Place a paper bag over your mouth. Breathe in. It makes a racket. That was Jillian, sleeping on her back, in her crib, swaddled in a pink sleeper. A worrisome racket, always wheezing.

  11/22: Saw Dr. McConville for Jillian’s congestion. McConville said bad cold. Treat with salt water drops and suction out.

  Must watch feedings. Jillian lost weight: 7 pounds, 2 ounces.

  We did as we were told. We put the saline drops in Jillian’s nose. She wailed. We would take a plastic suction device, nearly a foot long, that was narrow but for the rubber bulb at one end, and we’d squeeze the bulb, then gently put the narrow plastic end into each nostril, before releasing the bulb. Jillian wailed. She made such a fuss we thought the world was ending. The little girl who couldn’t wait to be born had no trouble expressing her feelings after she’d arrived. Squeeze and release. Squeeze and release. Wail and wail.

  11/23: Thanksgiving Day. Still congested. Eating less. Began spitting up feedings in early evening.

  11/24: Saw Dr. Jones, 4:30, for congestion. Not eating. Vomiting. Weight, 6 pounds, 15 ounces.

  We took Jillian to Children’s Hospital that night, and they took a chest X-ray. They hooked her to an IV to give her nutrients and to prevent dehydration. They said she needed aerosol treatments to open her airways. And they said she needed oxygen.

  The last item dried my throat. Needed oxygen? I didn’t know what that meant, except it couldn’t be good. My daughter couldn’t breathe on her own. I knew she wasn’t eating, and she was losing weight, but now she couldn’t breathe. The simplest acts of survival were suddenly complex. Kerry’s careful journaling was becoming a diary of terror. Into the tunnel we went.

  Had a rough night of it. Seen by Dr. Strait. Believed to be bronchiolitis, X-rays tomorrow should confirm.

  THE X-RAY CONFIRMED THE diagnosis, sending us into ten days of purgatory.

  Jillian was admitted into isolation. Doctors couldn’t risk her incurring any additional infections. They placed her in a crib. Several times a day, doctors moved her into a tent in her crib and gave her aerosol treatments designed to open her airways and give her lungs some relief. After the aerosol, they suctioned, same as we did at home. Jillian wailed for them too.

  Then we tried to get a few ounces of formula into our sick, angry child.

  11/26, 1 a.m.: Aerosol treatments ordered for every two hours.

  3:20 a.m.: Aerosol treatment

  5 a.m.: Aerosol treatment

  7 a.m.: Aerosol treatment

  8:30 a.m.: Aerosol treatment

  9 a.m.: Took 1 ounce of formula

  And so on. Aerosol, suction, wailing. Sleep. Formula. Repeat.

  11/27, 9 a.m.: Dr. Strait came in and said probably three or four
more days.

  THREE OR FOUR DAYS of treating and watching for improvement, and Jillian could go home. It wasn’t, though. It wasn’t three or four more days, which would have been bad enough. That would have meant Jillian was in the hospital for a week or more.

  When she couldn’t breathe, even with the aid of a tube running into her nose, the nurses put Jillian into what we called “the oxygen box,” where she could take in the pumped-in air through her mouth.

  The nurses spent a lot of time trying to find places for IVs on Jillian’s body. They’d try an arm, and Jillian would pull out the IV, or a vein would collapse. They tried her foot, they tried her head.

  “Vein not working,” Kerry wrote in the 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 and observing 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 to our 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 summoned. She wasn’t polite about it. She was also correct. Medicines had been mixed up. A few days later, Jillian was crying uncontrollably in the middle of the day. Crying was bad, if only because it produced mucus in the nose, which drained to Jillian’s lungs.

  “She’s crying because she’s hungry. I’ll feed her,” Kerry said.

  “Not now,” she was told. “We don’t want any liquid in her throat when she’s crying.”

  “She’s crying because she’s hungry,” Kerry insisted. “I know my child.”

  Again, no.

  “Why won’t you listen to me?” Kerry yelled, a week of frustration and worry purged in one primal scream.

  They listened. Kerry fed Jillian, and Jillian stopped crying.

  Still, Jillian was losing weight, and her lungs were not clearing. She’d been in the hospital for a week. We needed something good to happen, and we needed it fast. “I’m starting to get scared” was what I told Kerry. “It’s beyond the normal worry.”

  We were beyond tired. We wore our fatigue like a second skin. It defined us, it was almost a painkiller. By Day 8, we were numb. The hospital ceased being a place of hope. It was a repository for dirges, featuring precise, beeping-monitor solos. We hadn’t given up on hope, but we really wanted to see some.

  Then suddenly the monitor went off, and the platoon of nurses marched in. I scanned their faces. Nothing. Then one nurse left quickly. Seconds later, two doctors came in.

  “What’s wrong?” I asked. Kerry and I were told to step back.

  We backed up—away from the doctors and the nurses and the crib holding our daughter. Seven people were surrounding the crib. I thought Jillian was going to die. I didn’t blame the doctors, the hospital, Kerry or myself then. I didn’t blame anyone. I was all out of blame.

  Instead, I closed my eyes and prayed this:

  “God, do not bring Jillian this far, only to let her leave. You blessed us with her. Let her life be a blessing. She is here for a reason. Her life is not an accident. Do not take her before we find out what that reason is.”

  Our tight world turned inward another notch: Crib, doctors, Jillian. There was nothing else on the planet, absolutely nothing.

  A nurse moved away from the crowd around the crib and left the room. She returned with yet another long needle at the end of yet another long tube. For this latest attempt at finding a suitable vein, the nurses shaved Jillian’s head. Kerry, ever the calm portion of this marital unit, approached the crib, sidled between the nurses and collected Jillian’s freshly shorn locks. Daughter on the brink, mother collecting hair.

  “First haircut,” she explained later. “I had to save her hair. The first haircut is the first haircut, no matter where you have it.”

  Another nurse removed the needle from its sterile packaging, and Kerry knew she was needed there to hold Jillian down before the nurse jammed the needle into the top of my daughter’s head. I had to leave the room.

  AND THEN THE DAMNEDEST thing happened.

  It was odd, it was lucky. It was Jillian being Jillian at the most perfect time, when nothing else would do.

  At the feel of the needle, Jillian started screaming down to the tip of her toes. She screamed at the pain of it all and maybe the injustice, too. Jillian might have lacked the smarts to understand what was happening, and the capacity to wonder why it was happening to her. But she knew she was hurting; and she knew she was angry and had had enough. She was done with all of it. She was born on the day of the San
Francisco earthquake, and now she was moving her own personal fault line. She was shaking her metaphorical fist.

  What happened next is easily described but not easily explained. You could say the force of Jillian’s protest shook heaven and earth and, not coincidentally, a great gob of the junk currently fouling her lungs. You could say that Jillian literally screamed the snot out of herself.

  It was Jillian saying, “I’m sick of this, and I’m not going to take it anymore.” It was a wail that topped all those that came before it, in emphasis, volume and sheer anger. It was like nothing I’ve ever heard.

  THAT TOXIC GOB OF evil mucus dislodged itself from Jillian’s lungs and made its way up her throat and out the front door of her mouth. This six-pound child’s screaming revolt had achieved what a week’s worth of aerosols and meds had not.

  I believe that Jillian’s spirit saved her life. It saved her for us. She was not going to leave so soon. Too much to do. Too much Jillian to spread around. Much more time required. No time for any more of this hospital.

  12/2, 12:30 p.m.: Dr. Jonas, new doctor on rounds. Says Jillian is doing better. Her lungs sound very clear.

  The aerosol treatments continued. The suction and the wailing, the feedings, 25 cc’s at a time. But now Jillian was doing better. Two days later, they removed the oxygen box from the crib. The day after that, she stopped needing the aerosol. The next morning, we bathed her. And we weighed her. She was 6 pounds, 14 ounces—one ounce lighter than when she’d arrived at Children’s Hospital. Only three ounces more than when she was born, six weeks earlier.

  There was a knowing in her eyes though. You see it all the time in hospitalized kids. They always appear older than they are, as if the struggling they did with something beyond their control had informed them about life’s vagaries in a way that healthy kids will never know.

  Sick kids have struggled, they’ve endured. They own something most of us never will: A wisdom, a patience, an ability to cope. Whatever it is, it belongs to Jillian, and has for 24 years.