Five Years Later: Part 8

Fourteen weeks after the stroke she comes home, walking with a hemi-cane and an ankle brace, her lifeless left arm in a sling.

Winter is on its way out, leaving an oozy, muddy, rutted-up earth. We sit at the kitchen table, in front of the window. I am in the same chair where she sat on that night almost five months earlier. Framed by the squares of the window pane, the birds outside visit the feeder.

“Dad said I should make sure you know that when I cry, it’s not because I’m sad. It’s because I’m happy,” she says.

I stop chewing for a moment. I look at the bird feeder to see my first Robin of the season.

“You know that, don’t you?” she adds.

It seems like a good place to start. I’ve stopped measuring the future in terms of the past, waiting for myself—and my mother—to re-emerge the same as we had been, as if we’d just returned from vacation or woken up from a dream. We have only just begun to re-define ourselves and our family, one moment at a time. I’ve said goodbye to the familiarity of the past, and accepted the uncertainty of the future.

She starts reading her daily devotions, using a pink index card to help her follow the line. Her hair has grown in around her incision. I glance at her gratitude journal, lying open on the table.

“Our homes are our sanctuary from the world,” she has written. “Our lives are made up of all the little traditions and experiences we share with people. Cherish every moment.”

“Did I sign up for this?” Dad jokes, as he helps her walk to the bathroom. “I’m not sure this was in the contract. It must have been in the fine print.”

“You better make sure you have it in the fine print,” she laughs, turning to look at me.

And I think to myself that we are all in each other’s fine print, neatly inscribed onto lines containing our greatest liabilities. With every patient comes a family, sustained by their community and their faith in the medical professionals to whom they entrust the most precious pieces of their fine print. This is the year I am getting married, and all around me, I see love in fine print.

Five Years Later: Part 7

I am lying on a bed in a hospital gown, a Doppler ultrasound machine next to me, waiting to have a trans-thoracic echocardiogram with a bubble study. This test will reveal whether I have a hole in my heart--that patent foramen ovale that threads through the family lines.

“Have you had an IV before?” the nurse asks me.

“No. But I’ve given blood,” I reply.

“Oh, well this needle is about a third of the size. Don’t worry—I’ve done this a couple times before,” she jokes, as she sticks me.

“At the end of the echo, we’ll be injecting agitated saline into your IV, and then we’ll watch it move through your heart,” she tells me.

Jason, the echocardiographer, attaches cords to my chest. “This is a Doppler ultrasound,” he says, applying a jelly-like substance to my chest and placing a flat, rectangular object there.

Suddenly my heart is on the monitor. It is stunning. A big oblong ball of pulsing light surrounded by darkness. It is heaving and thrusting and appears to be divided in two.

“See this smaller side?” Jason asks. “This is your pulmonary side. It goes right to the lungs. All your veins feed back to this side. The other side is your systemic side.”

He starts capturing pictures of my heart on the machine.

“Did you know the aortic valve is the point of highest blood pressure in the body? Look, the mitral valve looks like a fish mouth! Do you want to see your lung? Take a deep breath.”

I inhale. My heart disappears. I exhale and my heart appears again. I can’t help laughing.

“Our heart valves are actually like one-way doors,” Jason says. “Two of the valves contract at once and the other two relax. So it’s not really a pump. If your heart was really a pump, you’d only live five years and your heart would have to be three times as big.”

“My Mom has a hole in her heart,” I tell him.

“Ah, patent foramen ovale,” he says. “It means ‘the Window’ in Latin. It’s there so we can breathe without our lungs when we’re still inside our mothers. That explains why you’re having the bubble study.”

The nurse injects the agitated saline into my IV.

Instantly I see the right side of my heart fill with bubbles.

“See all the bubbles in the pulmonary side?” the nurse asks me.

Jason is suddenly quiet for the first time. “Wait, let’s do it again,” he tells the nurse.

“Why?” I ask, watching the bubbles on the monitor.

“I don’t leave any room for doubt,” he says.

He takes a series of digital pictures on the monitor. The muffled sound of my beating heart comes out through the machine as he captures the sound files for the cardiologist to listen to.

“So when do I find out?” I ask him when it’s all over.

“Next week,” he says.

But I don’t have to wait. I saw the bubbles move. I know I have my mother’s heart.

Five Years Later: Part 6

Five weeks after the stroke, the neurosurgeon says it’s time to put Mom’s head back together. He tells us that he will re-attach her skull using 4 millimeter screws and some metal plates.

“Will you be using a power drill on my head?” Mom jokes to the neurosurgeon, her voice soft and raspy. “I’m not entering any beauty pageants anytime soon so it should be fine.”

She alternates between humor and bouts of deep sadness that escalate as she becomes more aware of her physical limitations. At first, she could not even open her eyes or speak, so we held her eyes open while she used markers and a dry erase board to communicate. But with occupational, speech, and physical therapy, she went from bedridden to walking with a four-footed hemi-cane in a matter of weeks.

After her first brain surgery, Mom began taking blood thinner medication, which helps prevent blood clots, but also increases the risk of bleeding. As a result, her blood thinner medication is reversed before her second brain surgery, restoring her blood’s natural ability to clot. As a pre-caution, a radiologist places a small umbrella-like device called an inferior vena cava (IVC) filter in her abdomen to catch blood clots until she heals from surgery and resumes her blood thinner medication.

“The filter is in her abdomen, in the major highway known as the vena cava,” the radiologist explains. “We come up through the femoral veins, the major veins in the legs, which make a fork in the road and bifurcate from the vena cava, the main vein that empties up to the heart.”

Leaving only a minuscule incision, the radiologist positions the filter via tiny cameras and small catheters, all so Mom won’t pass another clot while they are screwing her skull back on. Doctors can now thread tiny catheters and devices through veins and arteries, transforming open heart surgery into minimally invasive procedures like angiograms, angioplasty, and stent placement, yet cerebral edema can only be treated by cracking open Mom’s skull and cutting out part of her brain. Modern medicine contains surprising juxtapositions of old and new, invasive and non-invasive.

After the surgery, she is awake, but groggy. Iodine is lightly smeared on her right cheek, mixed with blood. She wears a turban of gauze. She says she can’t find her thinking brain.

“This brain says bad things,” she tells us.

“Like what?” I ask.

“That maybe it should be like ‘Million Dollar Baby.’”

I think for a moment and then explain the allusion to Dad. “It’s a movie about a boxer who asks her coach to euthanize her after she becomes paralyzed.”

We are quiet.

Despite tremendous physical healing, I can’t help but think that another type of healing—much more elusive, hard to treat, and slow to heal—has hardly begun. With physical rehabilitation has come a devastating awareness of her physical limitations. We have been well trained in the use of wheelchairs, hemi-canes, and leg braces, but we are unable to deal with our own grief. I fear random, unpredictable things, like the brain not having enough room to swell, or a clot smaller than the tip of a pencil causing a stroke. When it comes to mortality, we have a natural suspension of disbelief, and mine had been forever shattered.

As we try to chase her bad brain away, on the other side of the curtain dividing Mom’s room, an oncologist is telling Mom’s elderly roommate, the primary caregiver for her diabetic daughter with kidney failure, that she has terminal liver cancer.

Five Years Later: Part 5

“We detected some right-to-left shunting, consistent with PFO,” the cardiologist says, discussing the hole in Mom’s heart.

“Her mother and two of her brothers had that too,” my sister remarks. As a nurse, my sister understands exactly what the cardiologist is talking about.

PFO. Patent foramen ovale. A hole between the chambers of the heart that allows blood to travel through an unborn baby’s heart and body, while bypassing its developing lungs. At birth, when the baby’s lungs become functional, blood begins to flow through the lungs, and the foramen ovale soon closes. However, medical research suggests that in about 25 percent of the population, the foramen ovale remains open, and is associated with an increased risk of ischemic stroke. Doctors believe that the PFO can allow blood to bypass its normal route, acting as a window that can shunt blood headed to the lungs, which filter chemicals and blood, back into systemic circulation, and on to the brain or other parts of the body. According to the American Heart Association, if this counter-flow carries a clot, it can cause a stroke, and clots can even form in the PFO itself.

My mother is the youngest of four siblings, including two brothers who died of strokes at ages 62 and 70. For us, this is an important clue: family history of PFO and stroke. And there are other clues.

The stroke was caused by a blood clot lodged in her right carotid artery, obstructing blood flow to her brain. A deep vein thrombosis (DVT), also known as a blood clot, formed in Mom’s leg sometime after she broke her foot. One neurologist suggested that part of this clot traveled to her right carotid artery, causing the stroke. Another neurologist speculated that the stroke was caused by a clot that likely originated from the PFO.

And there is another clue. A blood test reveals a clotting disorder called lupus anti-coagulant. A propensity to clot. A broken foot combined with a DVT, PFO, and a clotting disorder. A perfect alignment of rare circumstances.

Five Years Later: Part 4

Lori is different than many of the nurses in the critical care unit. She talks to me. And she uses words I understand. She tells me she has worked as a flight nurse in Detroit and that she’s been a nurse since the Florence Nightingale days.

Mom’s head is wrapped in a turban of gauze and tape. Her brain is so swollen that her right eye is bulging, like someone punched her. Intubated and on a ventilator, her tongue is bloody, crusty, swollen, and sticking out of her mouth beneath the endotracheal tube. Her chest heaves and a muffled, junky cough comes out through the ventilator, triggering an eerie, honking alarm.

We are hopeful. Last night Mom put her right hand up to her mouth and touched her breathing tube. Throughout the day, she wiggled her toes and fingers on her right side to command: thumbs up, thumbs down, and a wiggle of her pinky. Purposeful movements.

But now it is just before 4 am and her blood pressure is erratic. Alarms are sounding. She’s terribly congested. Her temperature is almost 102. Lori puts ice bags and a cooling blanket on her.

“Let’s just see what the next hour brings and then go from there,” Lori says. “This is the way it is with neuro patients. It’s like walking a fine wire fence. They could go either direction at any time. All we can do is read the symptoms and treat each one.”

We go through each night like this, walking the fine wire fence. Wiggle your toes. Squeeze my hand. We read to her, paint her toenails, and play her CDs. I realize that we have the same ridges in our fingernails, and that my toes are exactly like hers in their size and shape.

The noises haunt me. The whistling compression of air as the Venaflow sleeve contracts on her right leg, preventing the formation of blood clots. The beeps and clicks and alarms on the IVs and on the monitor that measures intercranial pressure. So many alarms.

For 13 days she walks that fine wire fence, the mysteries and miracles of critical care unfolding each moment. Medications support her blood pressure and for a while she doesn’t breathe above the rate on the ventilator. We watch fearfully as her intercranial pressure increases. Her heart rate and temperature are persistently high. She receives antibiotics for pneumonia. CT scans check for bleeding and swelling in the brain. A feeding tube is placed and so is a peripherally inserted central catheter (PICC line) for drawing blood and administering medicine arterially. She has high blood sugars so she is on an insulin drip. Her raw and scabby fingers are poked often to test her blood sugars. Her blood is drawn frequently to monitor delicate levels.

We have lost our center. On good days, we are giddy with hope. On other days, we cry and wander and try to prop each other up. We are in the embrace of friends, family, co-workers, and hospital staff who bring us meals, cards, flowers, and prayers. We are disoriented. We lose things—our vehicles, our coats, our minds. We are relieved to find Mom’s wedding ring at home. And life goes on. There are bills to pay, plants to water, pets to feed. We have divided Mom’s life among us, and still we cannot keep up.

One night, a family is standing around the bed of a new patient in the critical care unit. All the lights are on in the room. Moments later, an alarm sounds.

“Code blue, CCU…Code blue, CCU…” a computerized female voice repeats.

A woman screams. Footsteps pound down the hallway. “NO!!!!” the woman sobs.

More footsteps pound down the hallway.

In the middle of the night, I linger alone at Mom’s bedside, in this world of machines and monitors, where the sound of grief is profoundly louder than the combined chorus of many alarms. Where strangers don’t introduce themselves, bringing machines they don’t explain. I am terrified of the code blue. Terrified that we’ll have to bury our mother.

Five Years Later: Part 3

“Can you wiggle your toes?” a nurse asks. Mom moves the right side of her body on command, but there is no movement on her left side.

The nurses in the critical care unit check Mom’s neurological status every hour, shining a small flashlight in her pupils, pressing on her fingers and toes, and asking her to follow commands. But as the morning advances, Mom no longer responds.

At noon, when the nurse shines the flashlight in Mom’s eyes, she leaves immediately.

“We’re losing her, aren’t we?” Dad questions the nurse in the hallway.

“Her pupils are uneven. I’m calling the doctor.”

Within minutes, the neurologist arrives with a neurosurgeon. The neurosurgeon is tall, with a boyish face—big brown eyes and dark hair. He wears a knee-length white coat that has “Brain & Spine Institute” stitched on the left breast pocket.

“You have to decide,” the neurosurgeon says. “You don’t have time to call anyone. You’ve got to tell us now. If we don’t operate immediately, she’s going to be brain dead in a few hours.”

When the brain is injured, like any part of the body, it swells—a condition called cerebral edema. Injury to the brain results not only from the infarction itself, but also from the resulting cerebral edema, which peaks 2-5 days after the stroke. Because the brain has little room to swell, as cerebral edema increases, so does intercranial pressure (ICP). The optic nerve is located close to the brain stem, so pupillary changes can indicate that ICP is at a deadly level, compressing the brain stem, which controls all vital functions including heart rate, blood pressure, and breathing.

The doctors explain that Mom’s cerebral edema is causing the damaged right side of her brain to shift over and compress the healthy left side and the brain stem. The neurosurgeon wants to perform a craniotomy. He will remove a large portion of her skull and remove the infarcted brain, to make room for swelling and to relieve pressure. Her skull will be stored in a sterile bone bank until it can be reattached.

“We have to give her every chance,” Dad says, looking at me. “Don’t you think?”

I imagine the neurosurgeon drilling open her skull and cutting out her dead brain. I want to scream. With all of our medical advancements, it seems so invasive, even primitive, that life-threatening cerebral edema can only be treated by drilling open Mom’s skull and cutting out part of her brain.

I know what we need to do. I just hope it’s what she would do.

Dad signs the consent forms. They take her to surgery. In the waiting room, someone hands me a small plastic container containing Mom’s diamond earrings. Grandma tells me her friend has been dreaming that “Josie lost her jewelry.” We realize we don’t know where Mom’s wedding ring is. We panic. We wait. Trying to make sense of things. Someone tells me about a 26-year-old girl who stepped off a curb the wrong way and broke her ankle. Two weeks later she died of a pulmonary embolism—a blood clot in the lungs. I wish I had heard the story sooner.

Five Years Later: Part 2

“It appears your wife has had a massive infarction,” the doctor says, looking at Dad.

I stare at the doctor’s ID badge, which says “Neurologist” below his name. He is a thin man with straight brown hair, carrying a brown leather bag over his shoulder.

“We’re bordering the critical window,” the doctor says. “So it’s now 10:15 pm and you say the last time you saw her functioning normally was between 7:30 and 8:00 pm?”

“Yes,” Dad answers, putting his hand to his forehead, re-running the numbers in his mind.

Ischemic stroke occurs when a blood vessel becomes blocked, prevents the flow of blood to the brain, and thereby creates an infarction, or death, of brain tissue. Within three hours of the onset of a stroke, ischemic strokes are treatable with blood thinners or anti-coagulants such as tissue plasminogen activator (TPA), which restore blood flow. After that timeframe, the risk of fatal complications, such as bleeding in the brain, increases significantly.

The doctor escorts us across the hall, and shows us CT scan images of Mom’s brain.

“I’m going to ask you again,” the doctor says, pointing to a darker spot on the right edge of the brain. “Are you absolutely sure about the timeframe? Because the damage I see here is so advanced that it’s typical of an infarction at least 6-8 hours out.”

We tell him again. We are sure. He ushers us back to the small waiting room.

“Look,” The doctor says. “When an infarct occurs, it’s like stepping on a hose. All blood flow gets shut off. The brain tissues start to break down and die. At this point, if we anti-coagulate her and get the blood flowing again, it would be like running over the hose with a lawn mower and then turning the water back on. The water is going to leak out everywhere.”

I feel like I’m deflating, all my vital air whistling out and the ground about to come up fast beneath me.

“What would you do if she were your wife?” Dad asks.

“I would give her the best possible chance,” the doctor replies. “I know I said before that we might do the TPA, but given the magnitude of the infarct and the critical timeframe, TPA would be contraindicated. Her biggest risk in the next 2–5 days will be cerebral edema.”

Dad crosses his legs, puts his hand over his eyes, and faces the corner of the room.

It’s like I’m watching a foreign film without subtitles. Is he saying there’s nothing he can do? Is he talking about my mother, who just turned 60—a thin, non-smoking vegetarian who exercises every day?

“You should call whoever you need to,” the doctor says. “She may not be conscious in the morning.”

Five Years Later: Part 1

At about 9 pm on the evening of November 9th, 2005, my phone rang, and, with the events that soon followed, cleaved my reality into a distinct “before” and “after.” It took years to let go of the “before” that our lives were, and years to accept the “after” that our lives became. I still cringe a little when the phone rings late in the evening, reminding me of how unpredictable life is, and how little control we all have. But gradually my fears have given way to gratitude—I give thanks each time that phone rings and I find out my friends and family are still safe and healthy.

In upcoming postings, I plan to reflect on this experience as it unfolded, including everything we struggled with and everything we have to be grateful for. I believe that it is our responsibility—as hard as it is in the heat of the moment—to grow and evolve no matter what challenges come our way. Sometimes writing can help you figure these things out, help you figure out how you feel about things. And as much as I wish I could undo my mom’s suffering, I have accepted the “after” with my whole heart and I am a better person because of it. It seems to me that this is everyone’s journey.

The following is the beginning of a series of excerpts from my essay, “Josie’s Window.”

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She slumps in a chair at the kitchen table, an invisible weight tugging at her left arm. Behind her, the white borders of the window pane create a checkered backdrop against the evening vista.

“I’m fine,” Mom insists. “The floor was slippery…I couldn’t get back up. Get my crutches so I can go back to bed.” Only the right side of her mouth moves, while saliva dribbles from the left. Her voice is raspy and muffled, like it’s lodged in her throat. Her eyes are only slightly open.

Dad holds out her crutches, but she doesn’t reach for them.

“She has a field cut,” he says, waving his arm in a vertical motion. “She can’t see anything to her left. I think she’s had a stroke.” He starts pacing, picking up the phone and then putting it back on the receiver.

She leans over and vomits on the floor.

I know what he is debating. Twenty miles of country roads to the nearest hospital, an ambulance will take too long. I lean over and hug her tight. I feel a pop and a hiss, as if I’ve punctured an air-tight package—the feel of something brick-hard becoming malleable in my hands.

We ease her toward the back door, her left leg dragging in its black orthopedic boot. She grabs the door frame in protest.