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.
Friday, October 15, 2010
Tuesday, October 12, 2010
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.
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.
Monday, October 11, 2010
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.”
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.”
Friday, October 8, 2010
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.”
“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.
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.”
****
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.
Thursday, September 30, 2010
Personal Legend
I just haven’t gotten back into my routine yet. Ever since I went on vacation and then started a new job, I’m still sorting things out. Often I’m so tired I just can’t seem to make writing a priority. I have to figure out a way to change this. Maybe I need to enroll in a writing workshop. I also can’t seem to motivate myself to do re-writing or more query letters after a round of rejections….I did get a little inspired the other night when we began reading The Alchemist by Paolo Coelho, which talks about the importance of finding your “personal legend,” or realizing your dreams. I’ll keep you posted on that.
My mom is doing IV antibiotics at home for a bacterial infection in her toe. Her recent hospital visit was scary for us all, being her first hospital stay in five years, when she was hospitalized for four months after a stroke. I think she felt—and we all felt—like this recent hospital visit was going to be like it was before, the way we felt when she first woke up and she couldn’t even open her eyes or talk and we all felt completely helpless and vulnerable. At that time, we held her eyes open and she wrote messages with colored markers on a dry-erase board. She went from bedridden to walking with a four-footed hemi-cane in a matter of weeks….but there was still so much healing to do—physically, emotionally, spiritually. I guess what I’m trying to say is that the healing goes on long after you leave the hospital. And this recent hospital visit reminded her of how far she has come. She can ask for what she needs, she’s not afraid to be alone, she speaks up for herself, and she’s much more independent.
I just hope that antibiotics take care of this infection. Every day, I ask the universe for two things: for my family to be safe and healthy, and to be able to realize my “personal legend,” to do the work I’m meant to do, whatever that may be.
My mom is doing IV antibiotics at home for a bacterial infection in her toe. Her recent hospital visit was scary for us all, being her first hospital stay in five years, when she was hospitalized for four months after a stroke. I think she felt—and we all felt—like this recent hospital visit was going to be like it was before, the way we felt when she first woke up and she couldn’t even open her eyes or talk and we all felt completely helpless and vulnerable. At that time, we held her eyes open and she wrote messages with colored markers on a dry-erase board. She went from bedridden to walking with a four-footed hemi-cane in a matter of weeks….but there was still so much healing to do—physically, emotionally, spiritually. I guess what I’m trying to say is that the healing goes on long after you leave the hospital. And this recent hospital visit reminded her of how far she has come. She can ask for what she needs, she’s not afraid to be alone, she speaks up for herself, and she’s much more independent.
I just hope that antibiotics take care of this infection. Every day, I ask the universe for two things: for my family to be safe and healthy, and to be able to realize my “personal legend,” to do the work I’m meant to do, whatever that may be.
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| Slide-Tape Recorder |
For now, I’ll leave you on a humorous note. You can learn so much about people and past times by looking at their things. I’ve enjoyed looking at old church cookbooks for this reason. I find myself working in a place that seems like a museum—containing relics of the past. I’m uncovering all sorts of crazy gadgets that I’ve never seen before. This is a slide-tape projector. You put your slide carousel on the top and an audio cassette in the slot and it projects the slides on the screen with accompanying audio. I imagine this was quite an improvement to the standard slide projector.
Pictured below is some sort of primitive teleconferencing unit called a “Darome.” Note the dust. Oh, how far we’ve come.
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| Darome Teleconferencing Unit |
Friday, September 17, 2010
Silver Lining
The last few weeks have been such a whirlwind. I had a rejuvenating vacation with friends in Portland and Sacramento. Upon my return, I started a new job, which (so far) seems to be one of the best decisions I’ve made in a long time. I knew I needed a change, but I didn’t realize how badly I needed this change. I already feel so comfortable and welcome in this new role—everyone has been so supportive and appreciative. It was long overdue.
We celebrated C’s birthday last weekend with a beautiful canoe trip on the St. Croix River between Taylors Falls, Minnesota and Osceola, Wisconsin. On our way home we stumbled onto the most unique sculpture garden. However, our day trip had an unexpected ending. We stood in the ditch and laughed and appreciated the fact that our car died in the most opportune location: right when we got back home, within sight of the VW dealership, which meant it would get towed for free by AAA. You have to appreciate your blessings in every form. Find the silver lining as they say.
Yesterday I saw this: “A big shot is just a little shot that kept on shooting.” – Anonymous
I am trying to keep on shooting. Although I am happy about the changes with my new job, I’m a little down about a few other things. My mom has a bacterial infection in her toe which has been lingering—despite numerous treatments with oral antibiotics—for several months. Yesterday she was admitted to the hospital to begin IV antibiotics. I’ve now received two rejections on the most recent article I sent out to get published. I haven’t heard back from one place but I’m assuming I won’t at this point. The news about our car has gone from bad to worse. It sounds like it may cost more to fix it than the car is worth.
Sometimes it’s hard to understand why things happen. For example, why my mom should have to suffer any more than she already has. Five years ago she had a stroke that resulted in a craniotomy, loss of function in her left arm, weakness in her left leg, vision problems, and more. When I start thinking this way I have to remind myself what I learned back then. Accept it for what it is…don’t question it or resist it and flounder in “why” and “what if’s” –this will only lead to more suffering.
We celebrated C’s birthday last weekend with a beautiful canoe trip on the St. Croix River between Taylors Falls, Minnesota and Osceola, Wisconsin. On our way home we stumbled onto the most unique sculpture garden. However, our day trip had an unexpected ending. We stood in the ditch and laughed and appreciated the fact that our car died in the most opportune location: right when we got back home, within sight of the VW dealership, which meant it would get towed for free by AAA. You have to appreciate your blessings in every form. Find the silver lining as they say.
Yesterday I saw this: “A big shot is just a little shot that kept on shooting.” – Anonymous
I am trying to keep on shooting. Although I am happy about the changes with my new job, I’m a little down about a few other things. My mom has a bacterial infection in her toe which has been lingering—despite numerous treatments with oral antibiotics—for several months. Yesterday she was admitted to the hospital to begin IV antibiotics. I’ve now received two rejections on the most recent article I sent out to get published. I haven’t heard back from one place but I’m assuming I won’t at this point. The news about our car has gone from bad to worse. It sounds like it may cost more to fix it than the car is worth.
Sometimes it’s hard to understand why things happen. For example, why my mom should have to suffer any more than she already has. Five years ago she had a stroke that resulted in a craniotomy, loss of function in her left arm, weakness in her left leg, vision problems, and more. When I start thinking this way I have to remind myself what I learned back then. Accept it for what it is…don’t question it or resist it and flounder in “why” and “what if’s” –this will only lead to more suffering.
Wednesday, August 25, 2010
Portland Farmer's Market and a Delicious Dinner
Today, my last day in Portland, we visited the Portland farmer's market, got a gourmet sandwich from a food cart downtown called PBJ's, and then came home and made a wonderful dinner (see the following pictures) consisting of homemade bruschetta, pesto, pasta, and more. I was so lazy after all of this that I didn't even want to blog but S bribed with me a bowl of chocolate ice cream topped with a delicious mixture of Farmer's market berries, peaches, and mango. I know, I know. I've been gluttonous all week. But I love experiencing the unique flavors of new places. The last three days have been full of delicious surprises.
It was interesting to see how the Portland farmer's market differs from the ones I'm used to back in the Midwest. I've never been able to buy a fresh, locally grown artichoke, nor have I seen such abundant peaches, raspberries, blackberries, and blueberries. Our peaches come from Michigan and Georgia!
More pictures are in the following album:
Thanks to S and L for a wonderful visit! I will see you both again soon. Thanks for always making me feel so welcome and allowing me to experience your world so completely. S is making a big decision about something and I will be thinking of her often. S, sometimes you can't reach decisions through facts or logic or what looks good on paper. Sometimes you just have to do what FEELS right and natural and normal and good. I'm there for you.
It was interesting to see how the Portland farmer's market differs from the ones I'm used to back in the Midwest. I've never been able to buy a fresh, locally grown artichoke, nor have I seen such abundant peaches, raspberries, blackberries, and blueberries. Our peaches come from Michigan and Georgia!
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| Farmer's market fruit bento |
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| Grilled artichokes |
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| Grilled tomato bruschetta |
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| Oregonian sandwich from PBJ's food cart downtown Portland: Challah bread, Marion berry jam, Rogue Creamery blue cheese, Oregon hazelnut butter |
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| Portland 2010 Final Day |
Thanks to S and L for a wonderful visit! I will see you both again soon. Thanks for always making me feel so welcome and allowing me to experience your world so completely. S is making a big decision about something and I will be thinking of her often. S, sometimes you can't reach decisions through facts or logic or what looks good on paper. Sometimes you just have to do what FEELS right and natural and normal and good. I'm there for you.
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| My hosts, S and L |
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| Hobbes, the bengal (one of their three beautiful kitties) |
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