IslandRoar

Patients I Can't Forget: Teddy

My first night on pediatrics, a 19 year-old boy coded and died. Unexpectedly and out of the blue.

I'd been a med/surg RN for a year, and because of this experience, I was transferred to Nights on peds after only a week of Day orientation.

One of my patients was a six week-old baby, in to rule-out meningitis. She was fine, to be discharged in the morning. There were no parents staying the night with her, unusual, but not unheard of. No meds, no IV's. Just feed her and change her.

Yet I was freaking out inside. "How often do  I feed her?" I asked the other nurses. I mean, what did I know about a newborn? I was 22.

"Do I wake her up or let her sleep? How do I know when she's eaten enough?"

They smiled reassuringly. "She'll let you know. You'll be fine."

The baby slept on and I tended to my other patients. The night was quiet.

Then Teddy coded.

He'd woken up to pee. But instead, his mother reported, he opened his mouth and out came the blood. For some reason she attempted to catch it in  cups. She thought we might want to test it later, see where it was from.

Teddy was not my patient, but I knew him from my week on day-shift, a fun, sarcastic, 19 year-old kid. He'd been diagnosed with leukemia at age 11, gone into remission, and been fine.

Then, the year before, he'd relapsed. And, although the chemo was helping, it had left him susceptible to a terrible fungal infection in his lungs.

Later, we would find out that the infection had eaten away at his pulmonary artery. Which picked that moment that he'd gotten up to pee to burst.

Because we didn't know this at the time, and didn't realize nothing we did was going to help, we worked on him for almost two hours. Pushing drugs, CPR, hanging blood.

His mother lost it when the nursing supervisor tried to pour the cups of blood down the sink. In her bathrobe, she got on the elevator and disappeared. The nursing supervisor went after her.

I ran to the blood bank, two, three times. Then hovered in the doorway, mostly watching the five, ten, it seemed like a hundred, people working on him.

Until, from somewhere down the long corridor, I heard my six week-old cry. I went to her and, without thinking, changed her diaper, popped open a bottle, and sat down in that dimly-lit room to feed her.

While I was rocking her back to sleep, her father appeared in the doorway. He looked exhausted. "I couldn't get back to sleep," he confessed. "I figured I might as well be here."

I handed her off and went back down the hall. The code was over, time-of-death recorded on the chart. Teddy's mother had reappeared with his father and sister, and they were saying goodbye.

The day nurses slowly drifted in. When my new head-nurse arrived, she put her hand on my shoulder and leaned down close to my ear.

"Welcome to peds," she said.

Working with sick children was like that. Most of them, like that baby, got better and went home. I see their smiling faces, their happy families, as one big blur.

Other kids, fewer, got sicker or died. And even these many years later, I remember every one.

 

Story Time

 

A few weeks ago the librarian at work who runs Toddler Story Time was off-island at a conference. They asked me if I would be willing to fill in.

As I generally aspire to be an optimistic, fearless sort of person, I smiled and said, "Sure."

Yeah. Right.

I had about two minutes to prepare. Okay, maybe it was closer to 30, but clearly I needed more. The parents and their tiny offspring assembled in the children's room, eying me with suspicion.

Perched with only half my ass on a kiddie-sized chair, I began reading from the pile of books the children's librarian had left for this purpose.

It was a tough crowd. The kids were all under two, but they were the least of my problems. I spilled out a bag of puppets onto the floor. Passed around bells. They were putty in my hands.

But their parents? Well, they expected more. Clearly I did not know the routine. Naively, they expected singing.

"Oookaay," I exclaimed brightly. "What should we sing?"

Then I drew a complete blank.

How embarrassing. There I was, a veteran mother with three ancient children. Not to mention the thousands I've cared for in the hospital. Although to be fair, sick or injured kids don't frequently require lots of singing from their nurses.

Maybe things would've run more smoothly if I could've administered IV antibiotics or listened to their lungs?

Meanwhile, the toddlers were waiting, bells at the ready. One adorable little babe sporting round pink eyeglasses stared at me with wide-eyed expectation. My heart melted.

"How about Itsy Bitsy Spider," one grandmother not much older than me suggested helpfully. And off we went. 

"You had to sing?" First-Born Son remarked incredulously that night on the phone when I recounted my tale of woe. "Those poor kids."

Do you see what I have to put up with? And he's the nice one.

Now that it's over, it doesn't seem quite so bad. Maybe I'll even do it again some time. Although I'll definitely bone up on my kiddie songs first.

I get to see that sweet little baby with the pink glasses each week when she and her mom check out their books. She always gives me a huge grin. I'm convinced she remembers who I am.

But I'm not quite sure if she's laughing with me or at me.

 

Wounds

One of my children has a friend who is a cutter.

She turns her anxiety and her anger and her pain on herself and leaves marks. On her arms, her legs.

She has a kit especially for this purpose. It contains what appear to be an exacto knife and several blades. I know this because she gave it to my kid once in a bout of optimism. She wasn't going to cut anymore. She was better, she was cured.

Except she wasn't. Within weeks the tide had turned and she was hurting herself once more. I guess she put together a new kit. It's easy enough when you stop to think about it. I look around my kitchen, my bathroom. If you're searching for weapons, there are plenty to be found.

I encouraged my child not to judge this friend too harshly. At some point in our lives we all turn on ourselves, inflicting damage in one way or another.

Many of us have issues with food. Some of us drink or take too much medication. Others seek out or continue relationships with people who abuse us. Emotionally. Psychologically. Physically.

Hopefully we recognize there are people to help us. Friends, professionals. Ourselves. Hopefully we get through it. Sometimes again and again. However many times it takes.

I've been very proud of my own kid for being there for this friend. For being brave enough to yell at her, and loyal enough to stand by her. For never taking on a burden that should only be borne by professionals. And for trusting me enough to keep me in the loop.

We all have scars. I've heard people say that the ones you cannot see are even worse than those you can. But I don't know.

Turning something sharp on your own skin, slicing it open and not understanding why seeing your own blood causes the pain in your heart to momentarily disappear? Then being forever left with a scar to remind you of what you are capable of doing to yourself?

I've seen her scars. They make me want to gather her in my arms and weep.

But she is getting help. Because she's smart and loved and incredibly brave. She will not give up on herself. And neither will we.

 

22

First-Born Son turns 22 this month. 22.

At 22 I was out of college and working in the hospital as an RN. I was hanging blood, starting IV's, and calling doctors in the middle of the night, telling them what needed to be done for their patients.

I was still 22 when I transferred to the pediatric unit and started caring for sick, and sometimes dying, children.

I felt so old, so completely grown up. And now I look at my son, all six feet, five inches of him, and realize what a kid I still was. But I was on my way.

Like him I had my own apartment with a roommate. But no longer a student, I paid my own rent. I paid my bills, bought my car, and took on my first cat. Oh, I still hauled my wash over to my parents' house, twenty minutes away, every other week, to use their machines while they were at work.

I may have gone through the cabinets and checked out the attic and basement while I was there as well, searching for anything I could "borrow" to use in my own place.

I had my parents over for dinner and I did not serve them spagettios or tuna fish. I bought a television and a rocking chair.

I didn't know what I wanted to do with the rest of my life except write, and already I felt the constraints of work and time affecting that.

I felt like I needed to act. A year later I was in the middle of making plans to move out west to be a nurse on a Native American Indian reservation when I met The Ex. I never went.

I don't have any regrets. But I'm glad First-Born Son is in a different place at 22. I want him to know he has time. Plenty of time.

He's  doing something he loves. In a place he loves. The rest will work out, one way or another. It always does. He's on his way.

What were you doing at 22?

At A Loss (part two)

 

If you haven't read Part One of this post, you can find it here.

 

After she got her hearing aids, Daughter #2's speech grew by big fat leaps and bounds.

In those first few weeks, she would cock her head to the side, exclaiming, "I hear sum-tin!" Then run to the door or window to check out what it was. I couldn't believe how much she'd been missing.

I steered myself for the years to come, the negotiations I would need to engage in, and the accommodations that would be necessary for her in the school system. In life. The uphill battle certain things would be for her, things I had so taken for granted with my other kids.

Do you know some people treat children with hearing aids like they're mentally disabled or slow? Yeah, they do. And some people are uncomfortable at the mere site of a kid with hearing aids.

Fairly or not, I came to judge my older children's friends by how they handled D #2's disability.

"Is she retarded?" One little boy asked, sneering. As though she wasn't even in the room. STRIKE OUT.

"What's your sister got in her ears?" another asked.

"Those are her hearing aids." I could see First-Born Son almost holding his breath as he said this. "To help her hear."

"Oh." The boy shrugged. "Like bionic ears. Cool." HOME RUN.

I started saving for the tiny, but enormously expensive, hearing aids that would fit inside her ear and be practically invisible, the kind the audiologist assured me would be perfect for her as an adolescent.

Then, before she turned five, on a routine audiogram, her hearing tested almost normal. We'd been going every three or four months, to our same amazing audiologist, Ellen, each time.

Ellen didn't know what to make of it. Neither did the specialists she sent us to in Manhattan.

"I guess you might call it a miracle," one doctor said. "Except I don't believe in miracles."

The director of her school took me aside and quietly suggested that I not share what had happened with the other parents; she didn't want to encourage false hope.

Today, D #2 still has fluctuations in her hearing and does much better if she can look at someone as they speak, but she no longer wears hearing aids. She sits in the front of the class by choice, and she works really hard to overcome the learning difficulties she has as a result of those early years. Really hard.

And really successfully. She is driven in a way my two other children never had to be. She wants it. Bad.

This then, is my very un-scientific theory to explain what happened: I was so sick for that entire pregnancy. I only gained 13 pounds, and she was 7lbs, 14oz, with the biggest placenta the nurses had ever seen. Looking back, I think I may have had some viral infection that was passed on to her, affecting her hearing.

Unknowingly, I continued to pass on this virus to her through the next year and a half of nursing. Gradually, after she was weaned, the virus dissipated, leaving only residual damage, in the form of fluctuations in her hearing.

At least, that's my attempt at a logical explanation.

But as for what I really think happened?

Well, let's just say that, unlike that doctor, I do believe in miracles.

Wouldn't you?

At A Loss (part one)

The following story will be told over the next two posts.

 

Daughter #2 was born hearing impaired.

We had no idea of this at the time. All I knew was that her cry was the most high-pitched, piercing sound I had ever heard.  I was a pediatric nurse and she was my third child; I knew my newborn cries (I later learned this cry is common in newborns with hearing loss).

As she grew, we would lean in, cup our hand to her ear, and murmur, "Sssp-ssp-ssp," like we were telling her a secret. We called it the "Whisper Game," and I'd played it with all my kids. They loved it, and eventually, at about a year, leaned over to "whisper" a secret back to me.

D #2 did the same thing. Except she merely opened and closed her tiny lips, never uttering a sound. Foolishly, I found this quirky and adorable, not realizing she wasn't making the whisper sound because she couldn't hear it.

"That baby looks at your face so intently when you speak," my mother would say. Of course; she was trying to read our lips, attempting to make sense of the jumbled sounds she was able to hear.

I should've known. My two older children had spoken several words by the time they turned one and were chattering away by two.

There is a video of D #2 on Easter, only weeks before her second birthday. She picks up a candy egg and says "num-num." And I nearly erupt with joy. "Do you hear that? She said num-num," I inform the camera. "She means candy!"

That video will never be easy for me to watch.

Thinking maybe she just needed speech therapy like her cousins, I took her for an evaluation. Part of this was a routine audiological screening.

It was anything but routine. I held her while the audiologist directed sounds through speakers into our soundproof booth. As they grew higher in frequency, D #2 sat in my lap, thumb in her mouth, oblivious.

There was shock, guilt, sadness. Not necessarily in that order.

But other people took it harder than I did.  As an RN I knew what was out there: brain tumors, cancer, diabetes, cerebral palsy...

Hearing loss? We could do that.

I got her enrolled in a special school for kids with speech and hearing issues. I wove multi-colored friendship bracelets to clip her hearing aids onto the collar of her clothing with so they wouldn't get lost. I learned to use my stethoscope to test her aids and batteries each morning. Taught the babysitter, The Ex, and First-Born Son how to put them in and turn them on.

The first time she cupped her hand against my ear and "whispered"  to me with real "sssp-ssp-ssp" sounds, I nearly cried with relief. With her aids, her hearing was almost normal. Other kids at her school were not nearly so lucky.

My mother was appalled whenever I put her hair in ponytails. "But then everyone will see her hearing aids," she complained. "Don't you want to hide them?"

"She wears hearing aids," I said. "This is her life. If we don't accept it, how will she?"

More next post...

Death-Defining

For her Freshman Seminar at college, Daughter #1 is taking a class on death and dying. Because she is just that lighthearted, laugh-a-minute type of girl.

As an assignment, students had to interview a person who has dealt with death as part of their work. D #1 took the easy way out and chose me.

She called me late the other night and grilled me for a half hour about my experiences as an RN working with dying patients. I don't know how she felt about it afterward, since she's about as forthcoming as the CIA, but I found the experience enlightening.

One of the questions was did I feel that working with the dying had changed my attitude about death. I didn't really think I could answer that. See, I started working in a nursing home at 16, long before I'd thought much about death at all. I have to say I'd been pretty sheltered from death; I'd never even been to a funeral.

From that, I was thrust into this world where it was commonplace for at least a couple of patients to die each month, often when I was on duty, and frequently requiring me to do post-mortem care, which basically involves washing and wrapping the body before it's transported to the funeral parlor or morgue.

I continued to work with elderly patients through college and my early days as an RN. Then I moved to pediatrics, where I had to readjust my views toward death to include young people, even children and babies. It was difficult but I considered it a privilege to work with these patients and their families. A blessing even.

As hard as it is to conceive of, I came to believe some people can live a life filled with more purpose and meaning in 8 or 18 years than others might in well over 80. I'm not saying it ever got any easier to see kids die. But I did start to see age as only one factor (albeit a significant one) in the big picture of death.

Another question Daughter #1 had was whether I thought doctors and nurses viewed death differently.

"Like night and day," I told her.

Generally speaking, physicians have an adversarial relationship with death, even those working with the terminally ill. And that's probably as it should be. Most of us count on our doctors to help us fight like crazy to avoid death.

Nurses, on the other hand, are more often the ones present when death occurs. And while we rarely welcome it, we learn to accept it as an inevitability. Having seen enough of it, we realize it's not always fearsome. And in some cases, when we know it's coming, it can even be poignant and memorable.

Don't misunderstand me. I realize the gaping difference between dealing with death on a professional versus a personal level. For all the dying I've witnessed, I've still been incredibly sheltered from it in my own life so far.

And when that changes, as it obviously will, I can only hope some tiny bit of the strength and courage I have witnessed in those I've cared for might be found within myself.

Spin Cycle: What Are YOU Good At?

 

For this week's Spin we're supposed to post about something we're good at.

Right away I thought of my writing and poetry. So please forgive me if I post a poem as my Spin. I wrote this about working nights as an RN on a pediatric unit, something I did for many years, something I also think I was pretty damned good at.

 

Nights on Pediatrics

One-year-olds with their knees
folded under their chests,
backsides high in metal cribs

shrouded in croup tents
hissing drops of mist.
Toddlers tossing with fever.

Adolescents clawing the sheet in search of
the next decent breath.
Kids with cancer swallow Tylenol

in their sleep while
fat drops of blood fall
from the bag through their veins.

The high-pitched screams of septic babies
blend with the deep-throated moans of sickle cell in
a young adult.

Nights on Peds.
We stroke their hair.
Tuck up covers.

Watch chests rise and fall with sleep,
brows wrinkled in dreams.
It’s all that we can do.

                                            *************************

Now you can go on over to Sprite's Keeper and check out what other bloggers have to say about the things they're good at.

 

 

Patients I Can't Forget

Nancy

Nancy arrived on our pediatric unit a shy, sullen, bone-thin 15 year-old. According to her parents, she'd been coming home from school and lying on the couch for months, saying she did not feel well, and complaining of vague aches and pains. They chalked it up to adolescent moodiness and tried to ignore her, hoping she'd snap out of it.

When that didn't happen, they brought her to the doctor, who ran some tests. The diagnosis was cancer, a tumor in her pelvis that had already metastasized into multiple nearby organs. She was given months, but she lasted almost two years.

Even though she was ill, in many ways Nancy remained a typical teenager. Some days she would hole up in her hospital room, the lights dimmed, buried in a mound of quilts and books, listening to her music and scribbling in her journal, offering only muttered responses to our questions.

Other days she'd "ride" her IV pole up the corridor like it was a skateboard, her head scarf off and bald scalp glowing. She'd visit the younger patients on the unit and talk our ears off as we tried to chart, then race back to her room and proceed with some redecorating project she'd just thought up that instant.

Her parents were older. She had siblings in their 20's. If only they'd taken her to the doctor sooner, some of the nurses whispered.

But I couldn't agree. How could they possibly have known? How often did teenage mood swings mask the symptoms  of cancer? If that were the case, every kid would spend their adolescent years being rushed to the doctor, going through test after test. For nothing.

I didn't have kids when Nancy died. But I've thought of her many times over the years. My kids have to complain an awful lot, and over time, for me to stop and say, okay, maybe there's something specific here we need to rule out or get checked out.

Nancy's cancer was so far along that the odds are it would have made little or no difference  had she been diagnosed a few months earlier . But I like to think knowing her helps me be a little more vigilant, always aware.

After she died, her parents found instructions she'd written in her journal for exactly how she wanted her funeral to be. She wanted certain music played and poems read. She wanted them to dress her in her white track suit, and to use her head scarf instead of her wig, so that she would look like her real self.

I didn't go to her service. But I heard they honored her every request.

Here's Looking at You...

Movie Night

Tonight I go off to another of my odd and unrelated jobs. I take care of Bill. It's another pretty nice gig.

Bill is 86. I cook him dinner and we eat together. He watches the news while I putter about. We chat, and I catch him up on the details of my life and my kids. I make sure he takes his meds and that he's set up for the night.

Oh, and here's the best part. We drink bourbon and watch old movies.

Yeah, life it tough. Actually, Bill is really the one drinking bourbon. But it makes him happy if I have a drink with him. His son, a good friend of mine who gave me the job, encourages this seemingly reckless behavior. I don't drink hard liquor, so my bourbon is mixed with lots of ice and water. Even Bill gets a little twinkle in his blue eyes when he sees my watered-down glass on the coaster.

"Not much of a drinker, are you?" he says, every time.

And when I bring him his second shot, he announces like clockwork, "You're a sweet, sweet girl." Add that to the fact that he tells me every week how nice I look, and he is pretty much the definition of my fan club these days, not a thing to be taken lightly.

He forgets a lot, Bill does. Each time I have to remind him which of my kids is at which school, and what they're studying before he nods. "Oh yes, I knew that." The short-term memory stuff is hard. But the long-term memory is sharp as a tack. When we decide which movie to watch he tells me "You're the boss," but he makes his preferences clear.

We watch the same films over and over, and for each one he can remember where he was the first time he saw it. "I was in the army in Basic Training," or "I saw that in Philadelphia in 1940." John Wayne in Stagecoach, Gary Cooper in High Noon, Robert  Montgomery in Night Must Fall.

And then there's Bogie. Bill adores him in The Maltese Falcon, and Key Largo, and he'd probably watch Casablanca every night if he could.

"I think it may be the best movie ever made," he'll say, and wait for me to agree.

Bill lives in an old island house that's been in his family for generations. There's an authentic whaling harpoon hanging over one of the fireplaces, and an original document signed by Abraham Lincoln on the opposite wall.

He ran his family's newspaper for many years, and with his wife raised five children. Now he spends his days reading, watching the news, and waiting for evening to come so he can have a couple of shots of bourbon and watch a movie with one of his kids or, sometimes, me.

He turns to me during certain scenes as we watch our movies, and grasps my hand with surprising strength. I know he's remembering some moment long gone, maybe from the first time he saw this film as a young man, or maybe something special about the person he saw it with.

"Do you like Humphrey Bogart," he asks, yet again.

I assure him I do, but what I really want to tell him is that, for the rest of my days, I will never hear Bogie utter those famous words, "Here's looking at you, kid," without thinking of him.

Patients I Can't Forget

Bessie

Bessie was one of my earliest patients. I was 16, working after school as a nursing assistant in a nursing home. Bessie was what we affectionately called a "Walkie-Talkie." Except that she walked, but she didn't talk. Ever. Patients in nursing homes who grow up with English as their second language often resort to their first language as they age. But Bessie resorted to no speech at all.

She was extremely affectionate, hugging us, stroking our hands. She would grow frustrated at times, pulling us to follow her so she could show us what she was trying to say. It was a great mystery to me.

There was no medical reason for her lack of speech. She could do much of her own care. Yet she was like a child, trying to get the staff to dance with her in the hallways or walk down the corridor holding hands with her, swinging arms like kids at play.

She exasperated the hell out of her roommate, Mrs. Crosby, who was perhaps my favorite patient. Mrs. Crosby was significantly more fragile. She could not get around on her own, and she was often forgetful. She became convinced that Bessie was evil, very likely due to her lack of speech, and she kept the curtain drawn down the center of the room so she could avoid her as much as possible.

"She sneaks up and down this hall, spying on people," she'd whisper to me. "I don't trust her at all."

In the room across the hall lived Gussie, a woman who spoke only Italian in a deep, guttural voice. Gussie was a creeper, and if she was not tied into her bed at night, she might wind up anywhere. Once she stole into Bessie and Mrs. Crosby's pitch black room in the middle of the night, and climbed into bed with Bessie, who was only too happy to have someone to wrap her arms around and cuddle up with.

But Mrs. Crosby was sure it was a man who'd snuck into their room, and she never forgave Bessie for welcoming this male intruder into her bed. I couldn't convince her that Bessie was not some cheap hussy, compromising her morals under our very noses.

One time Bessie pulled me over to her side of the room to show me photos. There she was with her husband and another couple, maybe ten years earlier. They were smiling, arms around each other, and clearly in the middle of an animated conversation.

I looked from the Bessie in the photo to the one by my side. To me, at 16, the one in the picture was already quite old, easily in her 70's. And I realized for the first time how old age, like every other stage of life, has phases to it. Bessie was clearly past the first stage of her old age, the part where we retire to spend time with friends and spouses, our health maybe starting to decline, but still able to be independent and enjoy the things we love.

It's a time that no doubt passes far too quickly, especially if it's cut short by the onset of illness or the loss of a spouse. Maybe something catastrophic had occurred and stolen Bessie's voice. Or maybe she just found she didn't have anything else she really wanted to say.

Now, in my 40's, I think of Bessie's photos and I think of my parents, who are old but not old, still in phase one.I hope they will be around for a long time. And I try and remember to listen, to hear what they have to say while they still want to say it.