“Redecorating After my Son’s Coma” by Lisa Fogarty

One month after we watched our 8-year-old son almost die in an ICU, I hung a massive portrait of Ringo Starr on our home office wall. Hanging Ringo was the final step in a home office renovation I undertook with the help of my dad and my husband Patrick. When we had initially arrived home with our weak boy and a suitcase of Linezolid, Flagyl, nebulizer treatments, and nutritional supplements, the first thing he did was slump to the rug and hug the dog’s face. Patrick and I looked at each other, both filled with some combustible combination of relief, gratitude, and anxiety over the possibilities to come. Would his fever return. What would the next lung X-ray look like. When will he be able to walk up stairs again. How do I bathe him fast enough so that he doesn’t shiver into hypothermia.

I don’t say any of those things aloud. Instead I say, “How lucky are you? It’s pizza night,” in a voice my family would later associate with a kind of mania that makes you scrub tubs with toothbrushes and fold shirts like the arms are a prize to be discovered. Feigning cheer was an energy drain and I ducked into the office to slow my heart rate. The office’s beige walls looked like corroded lungs and made me nauseous. I would have to burn the office and maybe the entire house down. I’d need to paint and replace the chipped oak desk that gives splinters, which become infected if not properly sanitized and can eventually lead to sepsis.                                                                          

That night Colin slept in his own bed for the first time in a month and a half and I ordered a black and white photo of Ringo Starr and a custom tangerine glossy frame that I’d assemble to hold Ringo. When Ringo arrived a few days later, I realized Patrick didn’t share my aesthetic vision. “I thought you were kidding,” he said. “Why Ringo? Why not John?”

My father, a huge Beatles fan, saw the photo and, amused, simply said, “His hair.” John and Paul had the same mop top at the time, but I doubted that would be the first thing anyone would point out about them.

My mother, who actually hung a poster of Ringo on her wall as a teen, saw it and said: “Oh. Ringo.”

Everyone else who saw it said: “Ringo?”

Before Colin went to the hospital I binge-watched The Beatles: Get Back, a three-part documentary by Peter Jackson. John Lennon is brilliant but bratty. George Harrison is soulful but pretentious in a Mongolian fur jacket. Paul McCartney is the Beatle who feeds oil into the machine long after everyone else has fallen asleep.

But Ringo is just happy to be there, happy to be alive, happy to dance with Paul’s young daughter in a studio while everyone else falls apart at the seams. You want to tell Ringo how to play drums? Give him a second to push his ego aside like one of George’s lux scarves and he’ll do it. You want Ringo up on that Savile Row rooftop for the Get Back concert? He’ll be there, no complaints. In my photo Ringo sits between a cymbal and tom drum. His right hand holds a stick and he wears a pinky ring and a gold bracelet. There’s an unlit cigarette in his mouth. He looks neither focused nor aloof, just ready.

When I decorate the office, I build around Ringo. Suddenly there’s a rug in the space and it’s hot pink. I paint the walls light gray and hang light-pink drapes. The gray bookshelf showcases pink books (The Fifties in Vogue, Love Poems) and on another wall there are orange-framed photos of the kids playing instruments, pink framed photos of Patrick in his old band, of Elvis Costello and the David Byrne in concert. The changes are obnoxious, too — I’ve moved several of Patrick’s items to the basement to free up clutter. Patrick makes snide comments about Ringo and about being displaced from the office. Maybe my changes come at a time when Patrick needs to recognize things he loves, as he loved them. Maybe he’s just pissed that his guitars are in the basement. If he were a Beatle, Patrick would be John — elastic minded, fearless, restless. Now, suddenly, his wife is paying tribute to the Beatle with whom he shares the least in common. Maybe he wonders who the hell he married. 

But I am raw nerves, quick to anger, and light years away from the ability to reflect or show grace. “It would be nice to feel some support here,” I snap one night. I am talking only about the office, only I’m not talking at all about the office.

I say it after what feels like the hundredth time I’ve administered 15 milliliters of Linezolid and 9 milliliters of Flagyl to Colin. The Flagyl makes him gag, but the pharmacy can only compound it with a small amount of grape flavoring, which barely masked the taste. After medicine, Colin will get one of his four daily nebulizer treatments and one of us will pound on his back with a silicone cup to break up remaining necrotized tissue in his lungs. Then I’ll change his bandages and apply Nystatin cream to rashes. He became anemic in the hospital so I’ll plan the next day’s breakfast and lunch and time them so that he doesn’t have milk too close to his iron-rich eggs and supplements, as substances in milk like calcium can decrease iron absorption. I worry that he’s falling behind in school. I’ll print out second grade worksheets on how plants procreate. Seed, germination, stamen, pistil.

“You never support me,” I say again, smoothly, coldly, like an assassin, just to make sure Patrick has heard me. He has heard me. It’s a cruel thing to say to a man who sits at his desk at work to keep the lights on and worries about his son from the moment he wakes until the moment he closes his eyes at night. Now we won’t talk for awhile. Now I can feel bad about something other than how our child nearly died. Of course I’m only talking about the office renovation.

One afternoon at the hospital the infectious disease doctor finds us staring out the window of Colin’s ICU room and tells us, “We all talk about what a great couple you are. A lot of parents fight here. You’d be surprised.”

It’s true. We hold hands all the time. We never fight. At night we slide each other’s sheets over the lumpy couch and fold-out chair. We call our 11-year-old daughter Kiera. She is at home being cared for my mother, my father, and Patrick’s sister. We sing her a good-night song, then we sing it to Colin and look for signs he’s listening in the way his breathing tube rises up and falls. We watch two episodes of The Office before bed, and say, “I love you.”

When they wake us at 4:30am to take a lung X-ray and draw blood, we shiver and cling to each other outside his room, wearing yellow hospital socks, hoping an X-ray technician doesn’t accidentally say something like “no change” or “left lung still looks bad,” which will mean the difference between closing our eyes for another hour or staring at the monitor until the next night. We interpret cold doctor speak to one another. “I know he said that terrifying thing, but what he really means is this slightly less terrifying thing.” Patrick takes me on walks, up and down the corridor, when the monitor siren by Colin’s bed goes off, telling wild stories of our son’s blood pressure and heart rate. Neither of us really sleep, we just lay together and wait for the machines to be silenced by his body reclaiming itself.

The day Colin was admitted to the pediatric ICU with necrotizing pneumonia, I helped a nurse restrain his thin arms to keep him from tearing off the oxygen mask. His blood oxygen levels had been declining since that morning, and the mask delivered oxygen at the highest concentration possible before the next step: intubation. Three days after he had tested positive for influenza type A, he started inhaling from his stomach. He dropped a remote control on the floor and couldn’t bend down because his back hurt so badly. At the hospital, Dr. T, the head of ICU and a man in his seventies wearing a blue and white Yankees lanyard, was at the foot of the bed. We met an hour earlier and I loved his soft eyes. Now they lacked the detachment I expected of people who can heal your child. I found Patrick by the window and we both realized it at the same time: the head of ICU doesn’t stand at your child’s bed when everything is going to be okay.

The word “necrosis” comes from the Greek “nékrōsis,” or death. Colin was a healthy child, but opportunistic Staph bacteria had infiltrated his lungs around the same time he contracted the flu and was killing his lung tissue. Doctors ordered X-rays and a CT scan. Patrick and I stared in horror at the scans after learning that healthy lungs should appear black. Colin’s scans showed layers of white liquified lung tissue blanketing his chest like cirrus clouds.

The only option was an operation that would require a surgeon to cut Colin’s chest open and drain as much fluid from his lungs as possible before placing him on a ventilator to give the antibiotic a chance to kill the infection. When I heard the word ventilator my body folded in half and I hugged my knees.

We took turns kissing Colin’s forehead in front of the operating room, and he wiped off our kisses like an 8-year-old boy. Family met us in a conference room on the pediatric ward. I stared at a watercolor on the wall, squeezed Patrick’s hand, and cried into the neck of my mother’s red sweater. 

Four hours later, Dr. C met us in the room and explained how he drained 450 milliliters of fluid from Colin’s chest — nearly a 16-ounce bottle of soda’s worth of necrotized lung tissue. There’s no good way to thank someone for their brain and their hands. There’s no good way to enter a room where you child is on life support. These are things you do in silence.

There was no separating my boy from the machines — they were the same being breathing in contract together. My brain made choices to protect me, starting with this one: I perceived the machines as friends, not foes. We had to all be on the same page: machines, doctors, nurses, Colin and us, working together to heal him. Before I found Colin’s face I had to see past tubes and wires snaking every surface of his bed, attached to his mouth, nose, chest, hands, and arms, and the thick bands wrapped around his legs and arms to keep his blood circulating.

Then I saw him: thick black curls, wide forehead. I knew his eyelids by heart. He was here.

I was afraid of him.

Afraid to touch him. Afraid to bump into an IV pole and knock out a potassium line. Afraid of kicking the collection chamber on the floor that collected fluid as it dripped from a hole in his chest.

Doctors and residents were in and out asking us questions — has he traveled recently? No. Has he ever had tuberculosis? No. Information hits us, one blow after another. His blood iron levels are low. He needs a blood transfusion. Clear bags appear on the gurney to drip life-saving liquids into his arm. His bowels aren’t emptying fast enough. His liver enzymes are high because of the Tylenol. He needs another blood transfusion. It was a constant reminder of how we consented to give our son to strangers and how unusual his compromised body was to them. I hated that they’d never heard him play piano or seen him solve a Rubik’s cube on his first try.

Nurses removed liquified lung tissue from Colin’s body like he was an object to manipulate. Business as usual, which in its own crazy way, was comforting. One minute Nurse Piera would comb Colin’s curls from his sweaty forehead, and in the next Colin would start heaving and she’d force a tube down his throat to pull up more necrotized lung tissue. Nebulizer treatments accompanied the rhythmic pounding of nurses beating his back and chest to break up tissue. His fever kept spiking. Medicines arrived from the hospital basement and were pumped into his IV. His body would convulse into shivers and I’d run from the room, fighting the impulse to push the wires aside and throw my body onto him.

Who am I if I can’t keep you alive?

Nurses grounded us. When Nurse Carolyn met Colin on her night shift she cooed, “He’s so handsome! Look at that hair!” I knew she was seeing him. She called Nurse Alanna into the room and they worked together, whispering to him, “Hi, sweetie, we’re going to tilt you onto your right side now.” Even in a medically induced coma, Colin heard us, they promised.

Sometimes Nurse Alanna would say something and we’d forget ourselves and laugh. I didn’t think you could ever laugh while your child was in a coma. We’d laugh because we needed to laugh and we’d laugh because we hoped he was listening and it would be his bridge to us.

Seven months after Colin was admitted to the ICU, Patrick came downstairs one morning after making Colin’s bed and found me in the kitchen. “I thought about something,” he said. On the first night in the hospital, before Colin was wheeled into intensive care and we met Dr. T and his Yankees lanyard, Colin had screamed when an oxygen mask was placed over his face. Patrick realized he didn’t have a stuffed animal with him in that moment to hold onto for comfort. Patrick had stayed upstairs processing the terror and waiting for it to subside, but it was sticking. I hugged him.

An hour later I couldn’t let something go.

“The oxygen mask — they didn’t put it on him that night, they put it on him the next morning,” I insisted to Patrick. “It was in the ICU. It was daylight.” He narrowed his eyes at me and said, “It was Friday night. I remember.” No, he didn’t, he didn’t remember. I was right. I was sure of it. I had sat on the bed and held Colin’s arms and it was daylight because I remember thinking, it’s April, someone is pushing their kid on a swing.

“I don’t know why the details matter,” Patrick dismissed me. Maybe he suspected I’d turn it into another fight. Maybe he was right. I dropped it.

Why do the details matter. I wonder all day about this.

The details matter because if I forget any part of this, how will I be prepared if this ever happens again?

The hospital chapel on the first floor was a few chairs, prayer mats, and stained glass windows. Patrick and I are bad Catholics, but we caught ourselves doing Catholic things in Colin’s room. When we waited for news on the doctors’ morning rounds, we bowed our heads. Finger memory drew my hands together in prayer position any time I thanked doctors, nurses, or the cleaning staff for their help. I thought, “God, please,” but wouldn’t finish the sentence. At first the chapel was a place to go because of lack of options, until it became a habit. We never discussed why, but we instinctively sat chairs and aisles apart, each on our own journey. Alone in my corner I tried to pray, but I had forgotten how. I thought of parents who’ve lost their children and was ashamed to ask God to heal Colin. I waited for words to come. All I could think about were his little shirts and socks at home in a hamper.

Please, God, please let me fold his laundry again.

I’d look over at Patrick, who always finished praying first. It wasn’t enough. His quickness didn’t convince me that God was listening. Convince me of something, think for me. I wished in those moments that he could have been someone not so smart and less cynical — someone hopeful and faithful. Someone I need instead of someone he needs to be. But Patrick was smart enough to know what to say to God, and smart enough to know he had that right.

In the ICU, we count hours in increments of two. Every two hours Colin gets his temperature taken and the results turn our stomachs, every two hours he receives Ibuprofen or Tylenol for the fever, every two hours a nebulizer treatment and a chest pounding. Every two hours a doctor delivers an update that paralyzes one of us until the other one provides a touch and breaks the spell. Every two hours one of us suggests a snack, water, a walk outside.

April had become May. We walked around the perimeter of a nearby park — never through it to avoid little boys with skinny legs running toward slides. We passed a boys’ Catholic high school called Chaminade, which had grounds bursting with primroses and an immense crimson-and-gold-painted field that reminded me that children are resilient. “Let’s send Colin here,” I said. Patrick was thinking it, too. I imagined a blue summer chasing away the clouds in his chest.

Three weeks later, the clouds began to part. Doctors had suspected a secondary infection and placed Colin on a second antibiotic called Flagyl. His fever broke 10 hours later and never returned. One by one, machines were removed from beside his bed until one ally remained, the machine that gave him breath. “We’re going to start lowering his oxygen levels,” Dr. M told us. They pulled back on the Fentanyl to slowly lift him from his coma. Every muscle in my body ached for my son, but I told myself to be patient. The body knows when it’s time.

He’s coming back.

Take it two hours at a time.

Nurses tell us that when we leave the hospital we shouldn’t expect to sleep again for awhile. They’re wrong about that. During those first few weeks home with Colin my body submits every night, like a fighter after 10 rounds. Sometimes while Patrick is sleeping next to me facing the window I place my palms open against his back. I spread my fingers to feel as much of him as I can at one time.

I never cry. I still have a job to do. I’m going to make Colin whole again. Who am I if I can’t keep him alive.

I think of all the big things I’ve been afraid of in my life, like airplanes crashing to the ground. And then how on an April afternoon as the first flowers opened their faces to the sky, the simplest bacterium tip-toed into his body and took over. I don’t think I’ll ever be afraid of sharks again.

The first time I cry is two months later. It’s 8:30 a.m. and I’m driving home from the only pharmacy that will compound Colin’s Flagyl antibiotic just enough to make him gag a little less. I have another six weeks’ supply of medicine in the passenger seat when I get the call. “His blood is beautiful,” the infectious disease doctor tells me. She has examined Colin every week since the hospital. Each time, before she draws blood, she tickles him on the table and when he laughs she nods at me because she can tell his lungs are clear. Each time I wait a day, only to hear about another marker in his blood that isn’t responding yet.

I pull over on Peninsula Boulevard. Cars are whizzing by. A crowd of people wait at a bus stop. I wonder how many of them know how lucky we are to live in this time and place with that doctor and her brain and those tests. Those are things you think in silence.

“Can you say that again?” I ask.

She laughs. “He’s going to be something one day, isn’t he?” I nod and start crying.

“You can stop the medicines. His blood is beautiful.”

Sir Richard Starkey was six years old when his appendix burst. The boy who would later become known to the universe as Ringo Starr was rushed to the hospital for an emergency operation to remove his appendix and doctors discovered he was also suffering from peritonitis, an inflammation of the tissues that line the abdomen. He fell into a coma. Doctors told his mother Elsie on three separate nights that Ringo might not wake up in the morning. But he kept waking up (and now, at 82, keeps waking up). He spent a year at the Royal Liverpool Children’s Hospital and fell behind in schoolwork. With twice weekly tutoring he caught up.

Then, when Ringo was 13, he contracted tuberculosis and was sent to a sanatorium for two years. There was no catching up scholastically this time, but here, in seclusion and sickness, he was given his first drum and learned to tap out a beat.

The rest is history.

I realize it’s strange to live with a man’s portrait on your wall and not know a thing about him so I Google Ringo one day, weeks after hanging his picture. I learn all of this about him and I think about the ways you can be here and there, sick and well, playing drums on a roof during the day and having nightmares at night. I think about how often we exist in the in-between.

Four months after Colin is in a coma, I’m alone on the couch downstairs while the kids sleep upstairs. I hear sounds, I hear him breathing, I visualize the ventilator rising and falling as his chest labored for breath. I hear coughing, only I’m not sure if I hear anything at all or if it’s in my mind. Fight-flight-freeze-fawn are trauma responses, my therapist tells me, and it isn’t uncommon to adapt them at different times during the healing process. There’s fight in me as I inch closer to the stairs, listening, ready to pull him out of bed if he coughs again, then hoist him over my shoulder and drive to the Emergency Room. But I’m mostly stuck in a freeze stage, in child’s pose on the couch, breathing deeply and telling myself, this will pass, this isn’t real. A cough is the body’s way of protecting his lungs. But what if another germ got in, what if he isn’t strong enough yet to fight it off. What if this, the healing part, is the mistake.

Seven months after Colin is in a coma I begin going to doctors. I don’t realize at first how many I’m seeing until I face the charges on one month’s bank statement: $25 co-pay at the dermatologist, $25 co-pay at the eye doctor, $200 out-of-pocket charge for the better dermatologist who doesn’t take our insurance. One doctor tells me I have Rosacea. Another tells me I have Dry Eye (an embarrassing anti-climactic resolution to my assumption that I’ve become allergic to my contact lenses). At my annual mammogram I’m called back into the examining room because something looks off. It turns out to be nothing but I sob uncontrollably while I’m putting my bra back on. One morning I wake up with a bump on my lip. Another day it’s a swollen eyelid. I convince myself the sharp pain in my side is a bladder infection until I get my period a few hours later. I follow the doctors’ advice for two days, maybe three, before I’m onto another problem. I’m ashamed of these visits. I’m embarrassed that I’m taking away time from people who have real problems. But I don’t know myself anymore and I don’t trust my body, or any body, because anything can happen to you whenever it wants to.

Colin is healthy now, but he refuses to stay still and it scares me. He keeps moving around, getting sick and getting fevers, catching coughs and getting over them. The autumn after his lengthy hospitalization we travel to Woodstock as a family. There are black bears playing in the hills behind our rented home. Colin and Kiera stare at stars at night. And I sit on the patio thinking: if we just get through this vacation with him and he doesn’t cough once maybe that means everything will be okay.

In the ICU I saw how short life can be and now I can’t unsee it. Sometimes we put Colin to bed and I stay upstairs lying under a blanket on my bed and listening, waiting to hear if he’ll cough. A cough is proof that I’m right: tragedy can happen again. Try to remember he barely coughed when he was sick, his pediatrician tells me. You’ll know when something is wrong. But there is no rational thinking. There is only a sound, like a cough, or an image, like a cartoon X-Ray on a cartoon TV show, and that’s all it takes to send me hiding under blankets. Two hours pass and I’m still waiting to hear him cough.

My therapist tells me I am experiencing a classic PTSD trauma response. My brain fears danger is around the corner so it sends a signal to my body to stay hyper vigilant. Don’t rest, it warns, stay awake for as many hours at night as possible, get up early. Get in front of the danger. Catch danger this time, catch it sooner than last time, catch it and trap it and kill it before it has a chance to multiply and proliferate in secret — like bacteria, like fungi, like cancer.

The cure for PTSD sounds like no cure at all. It’s talking. It’s breathing. It’s slowing down the body before you attempt to speak to your mind and then it’s whispering to your mind with kindness and empathy. “And if you do go to a doctor for physical issues you think you’re having, don’t tell them you have anxiety,” my therapist adds. “In my experience, women with anxiety aren’t taken seriously.” I buy a $20 silicone Buddha from Amazon that lights up in three colors to teach me the 4-7-8 breathing technique: inhale for four seconds when it glows green, hold my breath for seven seconds on purple, and exhale for eight seconds on blue. When the fear overtakes my body I cry, alone, in the bathroom, and sometimes on my husband’s chest. But mostly I breathe and listen to my body and wait for it to pass. In the ICU I learned that a body will not be rushed. Mine included.

It’s going to be harder on you both than it will be on him,” a doctor warns us in the ICU as Colin is slowly recovering. Good, I think. I can’t wait for that day. Bring it on. I’ll take it all, every ugly thought and fear. Just please make him healthy again.  Now that time has come, and as they promised, he runs and jumps and hurls himself face first into our sofa and then laughs. His teeth fall out and new ones grow in. He’s in love with a girl in his class who makes him belly laugh. He remembers that time in the ICU, but he also forgets it. There are days when he’s the most beautiful person I’ve ever seen and I’ll take it all for this.

People will sometimes ask me what I’ve learned. They mean well, but I also know they want to grab the big lesson just in case it happens to them. I don’t blame them. I want the big lesson, too. But I can’t tell them that I’ve learned to have immense respect for microscopic interlopers that can infiltrate your lungs and take over your body on a Friday morning in April. I can’t tell them that when your son is between life and death you’ll look down at his pulmonologist’s silver loafers when she tells you again there are “no changes” and you’ll be happy for a second knowing she won’t be in pain that day. You’ll think these thoughts because even though your body feels numb, your brain is refusing to give up on his life or your own. And right now her loafers are all you’ve got.

Colin’s illness and subsequent recovery made me fear so much. Incomprehensible fear. I saw things in the ICU that I can’t unsee. But it also filled me with gratitude so enormous that sometimes the only exit out of my body is through prayer, even when I’m not sure God exists.

Sometimes, when any one feeling gets to be too much, I think about the day Colin was released from the hospital. He had lost 20 pounds and his body was lost under a red T-shirt and jogging pants. An attendant rolled him out of the room in a wheelchair while doctors and nurses lined the hallways to clap and cheer for him. I walked beside him and Patrick walked behind us carrying a suitcase filled with medicines. We waited in front of the hospital for my mother to pull the car around. I realized we’d be home in time for Mother’s Day and that the air had become warmer and gentler. I didn’t know what would happen next; we were in that place in between and it would be weeks before I’d find the courage to remove the hospital discharge papers from my purse. Colin wasn’t sick and he wasn’t well, but it was late spring and the flowers kept growing.

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