Mama Said

His room is gray, the blinds drawn tight, all lights save those on the monitors dark.  I knock on the glass door again.

"Mr. Jones?  Mr. Jones, good afternoon.  My name is Hettie, I'm a student on the Psychiatry team.  May I come in?"

Mr. Jones stirs, his great brown eyes reflect slits of light from the open door.  He stares at me for a long while.

"Is it OK if I come in?  I'd like to see how you are feeling."

The slits narrow, and I see a great fist opening and closing over and over, quickly, methodically.

"Are you feeling alright?"

"I'm trying to decide it you're one of them."  His voice is a gravelly whisper.  My eyes adjusted to the dimness, I perceive his broad face, his flat affect.

"One of who, Mr Jones?"

"Them that been chasing me so long.  So long, those demons.  But I think you look real  nice.  You better come on in and shut that door and be here where it's dark and safe."

I pull a chair to the space between his bed and the door, measuring how best to effect a quick escape should need arise, and sit down, my hands in my lap.

"Mr. Jones, you seem very uncomfortable right now.  Can you tell me why?"

Both Mr. Jones' hands now alternate from fist to "jazz hands" at an alarming speed.  His feet bounce rhythmically against the bed rails.

"Because they lookin' for me.  I hear them, they flyin' around lookin', lookin' to get in my head again.  They was in my head this morning but you all took me to the MRI and I lost them and now they're lookin' again."

"Can you tell me about "them" a little bit?"

"Oh them's demons.  I been runnin' from them for just ever.  Sometimes they inside me, sometimes they in the room and they just stand there and just look at me.  And always they tell me to do bad things.  Real bad things."

"That sounds awful.  What do they say to you, Mr. Jones?"

"They tell me to run.  They tell me to throw things like my dinner tray and a phone once.  Once they made me cut myself."

I note the scars on his arms.  He swallows and shuts his eyes tight.

"They tell me to squeeze people.  To squeeze their necks.  But I don't so they just scream and show me horrible things."

"What do they show you?"

"My mama, all cut up and bleedin.  Bleedin' all over."  His voice is a whisper now, tears squeeze from the corners of his eyes.  "My mama been dead for years, died of sugar, but I think they got her and they hurtin' her."

"Mr. Jones, I'm so sorry you see that.  Your mama must have been a very special person.  Can you tell me about her?"

His body relaxes.  

"She was real special.  She was the only one there for me when the demon's come at first.  She took good care of me, got me some help, ya know."

"It sounds like she was a very good woman.  She sounds like strong woman, too - the type of woman who demons could never get a hold of."

"Think so?"  Mr. Jones voice is hushed in a sob.  "You think them demon's lying to me 'bout having mama?"

"I wouldn't put it past them, Mr. Jones."

Mr. Jones stares at the ceiling a moment, blinking back tears.  Suddenly, he smiles, his few remaining teeth brilliant in the dim light.

"Mama's standing up there."  He points up and I look reflexively into the darkness at the spotted ceiling tile.  "She says you right.  She says she good."  

Good, I think.  Now he's calm, now I can get some semblance of a history. But before I can say a word Mr. Jones blurts out, "I'll sleep now, 'kay?  Mama says I should sleep and I always listen to mama."  He turns away from me, curls into the fetal position and lets out a great sigh.  "You come back later, 'kay?  And look out for them demons, you just be careful."

"Ok, Mr. Jones, I'll be good and careful.  I'll come back this afternoon, okay?"

He is already snoring.  I shut the door quietly behind me and with a sigh begin reviewing the chart of the next schizophrenic patient.

Two Stories

He points to the trash can at my feet with a trembling hand, breathing heavily as he tries simply to manage his own secretions.  I hold an emesis basin beneath his straining chin, just as he loses control of a great gob of his own saliva.

"I can' neven' swall my own skit," he sputters, his moist eyes boring agony into mine.

I reach out and hold his hand, knowing how foolish it would be to ask him about his mood, his appetite, his energy, his sleep, his spirits.  I place my clipboard and pen on the floor and let him feel out the old words his stroke has made seem new, let him cough and cry and catch at the striking difference between his former life and the one he lives now.  Brokenly, he talks for nearly an hour, his eyes rolling from me to the sunlit window sill as he struggles to afford me but a glimpse of the strong man trapped in feeble flesh.

His frustration becomes to much.

"I wit I'd falla winow."  He lays back and stares at the half dead cedar beyond the blinds.  "Two sory 'nough to en' me."

Shrug

The attending and I have long finished our pimp/teach ritual - meaning we're at least an hour and a half into the case - and have fallen to paperwork and studying, respectively, glancing intermittently at the monitor.  The room is silent but for the high-pitched beat of the pulse ox and soft snores of the patient, coupled with the sporadic buzz of the bovie and the almost whispered conversation  of the surgeons just beyond the drape.  Every so often a surgeon raises his voice to direct Mrs. Jones - under MAC sedation - to move this way or that, and without a word she does as commanded, then recommences her ketamine stare and restful breathing.

Suddenly, with an echoing clarity and a volume misplaced in such a quiet setting there rings out a barking, "HEY!!!"

Startled, my attending and I gawk at each other.  His eyes are wide and piercing.

"Was that you?!" he asks, incredulous.

"Um, I think that was the patient," I reply, turning to look at the motionless, still staring Mrs. Jones.

"Mrs. Jones," Dr. B hovers over her face.  "Mrs. Jones, are you comfortable enough?!"

She continues to stare past him into nothing, blinks only when he places his hand on her temple.  The surgeon's head floats uncertainly over the drape.  The pulse ox beats on at a steady, normal pace, the blood pressure cuff finishing it's cycle to reveal an unchanged reading.

"Mrs. Jones?"

"Mmm.  Mm-hmm," she mutters slowly, softly, her blank expression unchanged.  

Dr. B shrugs.  The surgeon shrugs.  The resident shrugs.  The surg nurse shrugs.  I shrug, just to feel professional.        

But we push a little extra druganyl, just in case.

Silly Goose

"I'm 98 years old.  What do you think about that?!"

"I think that's pretty swell!" I smile.  "I bet you've got a lot of great stories to tell."

"Oh, plenty, plenty," he chortles, his thin red lips sliding over his toothless gums, gray eyes pinched with self-satisfied glee.

"Well, tell me about the medical conditions you've beaten back all these years."

The withered Mr. Jones launches into tales of "the sugar," "the pressure," "the nerves," "the cholesterol," "the prostate," "the 'monia" and "the tumor."  He rattles off his previous surgical history, deftly lists his meds and doses like a contestant on a high-stakes game-show.  His mental clarity rivals that of the host.  

He jokes as we attach the EKG leads and bp cuff, doesn't miss a beat as we place the IV's and art line.  He guffaws as he models his blue bouffant.  He winks often and reaches out to squeeze my hand frequently, as if our roles were reversed, he reassuring me.

The time soon comes to whisk off to the OR.  From my place at his side, I turn to take the break off the bed.  

And suddenly feel something unmistakable.  And surprising.  In that nebulous gluteal - or shall we say goose-ial - region.

I manage to maintain my composure as we wheel away, catching up his chart from the IV cart.  At the very back, marked with a purple tab, is a caution flag: Inappropriate Behavior.

Mr. Jones throws me a sly wink just before we push the propofol.

Lost

Although suggested by my recent silence, I have most certainly not run out of scrapes and wounds to medicate and debride at this early point in my medical career - just out of the will to tend and bandage them over these last few months.  This lost inclination is explained in the following post, also appearing on the Rheumatisms site.  In the coming days I will slowly be cleaning and covering my medical school experiences from the remainder of my OB/GYN rotation, and in my psychiatry, neurology, dermatology, and anesthesiology clerkships. 
________________________________________________________

"I don't know how it happened."

Well.  That was technically a lie.  It's been a good long time I've known how these things work.  But it just seemed absurd - IMPOSSIBLE - that this situation should arise.

The look on Mr. H's face was of quite probably the most pure bewilderment ever expressed in the history of human confusion.  We both sat dumbly for a long stretch, watching the waves wash over the rocks.

"With a baby?" he said finally.  I shot him a look that was quite probably of the second most pure bewilderment ever expressed in the history of human confusion, and we both burst into the kind of laughter that ends in dazed, trembly tears.

You may recall my crooning on about pesky periods and on those peskier yet contraceptive contraindications a while back.  The good news - no more periods.  The bad news - ooops.  We were pregnant.  And shouldn't be.  Should NOT be. 

One mild summer night, amid the sounds of crickets and bird evensong, (stop reading now if even the hint of sexual activity or of contraceptive use chills you) the condom cracked, and the gol-darn diaphragm suffered a disconnect.  We were only mildly concerned, as it was only 5 days into my cycle - meaning the chances an egg was on staff to welcome Mr. H's little tourists to my reproductive resort were quite slim - but I immediately called for Mr. Levonorgestrel to put out the "No Vacancy" sign in those parts.  Yet still, I discontinued all teratogenic medications (to the chagrin of my rheumatologist) until I could be sure it was still just the two of us.

Long story short, against all conceivable odds....and then there were three.

We knew my APS and still fluctuating SLE - not to mention my preconception medication cocktail - made me not the finest of incubators, knew that the odds of either a healthy child or a healthy pregnancy were not in our favor.  So, we kept our mouths shut and hoped for the best.  And the best seemed to be our lot.  Although trickling pregnancy and pregnancy-exacerbated SLE symptoms turned into a deluge around mid-August (hence the blog bail-out about that time), all tests and scans pointed to a healthy peanut roasting in my rickety oven.  Everything was expanding and bubbling and crisping just as it should.  The surreal feeling of the promise of parenthood - something we both wanted in our lives - slowly became real, and more beautiful than anything I'd ever known. In the second trimester, Mr. H and I had an excited, but pensive conversation about informing family and friends of our nutty little miracle.  We decided to wait just a bit longer.

And that was about all we had to wait.

A few weeks following that announcement discussion, and just two days after my latest prenatal checkup, I began bleeding at work.  As work is a very fine hospital, I high-tailed it straight to the ED.  But the speed with which I was seen was of no help.  Our little peanut - wonderfully nutty as it was that she came to be, divinely nutty as it was that she toasted splendidly for so long - had grown cold.  Despite my anticoagulant regimen, my APS caused blood clots to form at the placenta - that marvelous organ which protects and feeds and cleans and breathes for a baby while he or she is womb-side.  Josephine Isabella Strong became very, very sleepy as blood flow to her tiny body decreased.  And she sleeps on still.  We spread her ashes along the very shore where the idea of her first became real a few months before, near the waves which soothe and rock, where even on the darkest of blustery days light shimmers fantastically off the choppy waters.

It is a hard thing to be given something unexpected and beautiful and terrifying, to slowly mount such hope amid that terrific beauty, and then, when the terror has gone, leaving nothing but a sincere fervor, to have it stolen silently in the night.  A miscarriage in itself is painful and disturbing beyond any words I would bend in description.  I had the further stiff luck of experiencing a number of complications which are rather par for the course in one who plays with an SLE/APS/CVID handicap.  But, beyond the physiology, the psychology - the searing emotion tied up in it all.....it withered me for a while.  My function has been swell  - I perform well at home and at work, managed to hash things out with Mr. H and Honor all of my med school clerkships thus far - but my "thoughts for today" have been variously absent or dark for a time.  That time, and those dreams that came before, are lost.  I do apologize for it, as I see now that many of you commented and sent lovely emails wondering what had become of Headstrong - a half-apology of sorts, as I am sorry for your worry, but not that I coped as was best for me.

I return, still a little lost, but not of that complete and blank class - just a bit bewildered, with a pocketful of promise.

_________________________________________________________

You can visit the APS Foundation for a primer on APS and Pregnancy.

The First Time

The nurse hands me a patient rooming sheet with a smile. 

"Last patient, Ms. Hettie," she sings, settling into her creaky computer chair and typing furiously.  "Then it's home, home, home for the weekend!"  She spins in her chair and fist bumps me with gusto.  I love working with the staff at this clinic.

High on fist bump, I hum a little as I search for the patient in the E-chart system.  I find no records. 

"Is Ms. Jones new?" I ask the resident.  Without missing a key-stroke in the typing of his note on our last patient, my resident surveys the name and nods. 

"Must be her first prenatal visit.  You go on in and get her history and we'll talk about her then."

I'm still humming as I knock on the exam room door and enter.  A very pregnant 20-something is sitting in the chair as I come in.  

"Hello, Ms. Jones, I'm Hettie, the medical student on staff today.  What can we do for you today?"  I offer my hand.

"Oh, I'm all good.  I need you to look at my girl," she takes my hand and points behind me to the exam table where a very small, very pregnant young lady is seated.

This little Ms. Jones is 13 years old and, by their reckoning, is about 9 months pregnant.  She's been having contractions over the past 5 hours that she can barely breathe through.  Her mother is 26, pregnant with her fifth child, and she figures about 7 months along.  This is the first time they have sought care.  

I quickly gather a pertinent history from the youngest Jones, bringing her tissues as she sniffles through her contractions, then hoof it back to the staff room where I present quickly to the resident.  The nurse in her squeaky chair sighs a little as I finish up, drops her bag, and begins to ready admit orders for the resident.  A sterile cervical exam reveals 5cm dilation, 80% effacement, and  +1 station, and Ms. Jones' water breaks as we sit her up on the exam table.  But little Ms. Jones does not smile when we offer that she's half way there.

"This is my first time," she sobs.  "What do I do?!"

"We'll take care of you, Ms. Jones," my resident reassures her as I page the labor and delivery floor.

Back in the staff room I thank the nurse for getting everything ready for her admit.

"Oh, this isn't the first time such a thing has happened," she sighs.  "And it won't be the last."

And When He Tells Her

There are little dimples in her sagging cheeks, a tribute to the youthfulness that makes up her age.  She has one of the most genuine smiles I've ever seen, a kindness and cheer that envelopes from chin to widow's peak and blazes forward to interrogate neighbors' features for shows of joy.  Her whole body, in fact, seems to spring toward one in attempt to share her eager content, to tell of her secret to effortless mirth.  She impresses as one of those rare persons who can make do with just any lot, anything life casts her way, salt or sweet.  True to form, she is still smiling, still springing, still sweetening when he tells her she has inoperable cancer.

A Rock and A Hard Place

"I don't wanna be here," she hisses and crosses her arms over a swollen belly ineffectively disguised in a giant sweatshirt. Her friend sighs quietly, the picture of bedraggled fortitude in her lovely peach dress and little pearl earrings. The fatigue and the pain waver there, but the strength in her eyes is exquisite.

"Are you still using?" the attending asks again, his manner an impossible mix of neutral and forceful.

"NO!" comes the defensive reply. "I didn't ask to come here, you know! I have rights, you know!" Her slurred speech and tell-tale pupils betray her utterly.

Her friend's voice is small but strong. "Yes, just this morning," she catches the doctor's eyes. "And that child has rights, too," she directs a voice quavering with emotion toward her friend.

"You got NO RIGHT!" the 20-something explodes. "I thought you were my friend! This is my life! Nobody tell me how to live it! Just 'cause I'm stayin' with you don't mean you getta tell me whatta do!"

The attending slides in to lay a gentle hand on her shoulder, begins to say something defusing when the target of her high vitriol breaks in.

Her voice is startlingly calm, completely non-inflammatory in inflection and tone. "If you live in my house, you must follow my rules.  The rules are: no drugs and no skipping your doctor visits. If you don't like it, you may leave. If you decide to leave, I must then press charges for the stealing 'n' dealing you've done and you will get clean and cared for in jail. You have two choices: clean and care in jail, or clean and care with me. I'm not telling you what to do. I'm telling you what's doing."

"See how mean she is?! She can't doooo this," wails her charge, flailing her arms about in nap-due toddler fashion. She sobs for a while, peeking out between her fingers at intervals to gauge the effect. Finally she sniffs daintily, looks reproachfully toward her erect friend, and climbs onto the exam table.

When She's Done

The steadily increasing pains have reduced her to breathless whimper, the cheerful jesting of latent labor long forgotten.  She gestures for her boyfriend's arm, clutches at my hand as another contraction seizes her, panting as tears squeeze from her big brown eyes.  Her boyfriend is completely engrossed in his texting activities.  Her mother sits sullenly across the room, having muttered something about loose women and painful labors a few moments before.  Her brother and father have gone down to the cafeteria for hot dogs.  I squeeze her hand to the slow beat of my heart and encourage her to breathe, focusing my prickly annoyance at her relations on supporting her.

The labor is grotesquely long, tiring even to follow.  The epidural fails; she feels no relief despite the best efforts of the anesthesiologist.  She pushes for hours, sobbing between desperately long contractions, sweating through her thin hospital gown and trembling with exhaustion.  When her big, beautiful little boy is born, and as his skin colors from a ghostly lavender to a fresh, clean ebony, there is no one from her family to praise and welcome.  When she begins to hemorrhage, there is no well-loved face to calm her, worry for her. They've gone to dinner at the Olive Garden.  She should call when she's done.

How Hard It Is

The look on his face is of the shocked, but sheepish and scrabbling-to-look-completely-unfazed type.

"OH!  Oh, hello Hettie.  How are you today?"

From beneath my blazing malar rash I flutter my eyelashes obligingly and give the ready smile I really don't feel.

"Mighty fine, thank you.  And you?"

"Okay, thanks.  Sooo....  Get some sun this weekend?"

I manage a bitten-lip smirk and shake my head lightly.

"Oh no, not at all.  My immune system just up and bit me this morning."  I pause for a moment, then offer, "I have SLE."

"Oh, I'm sorry," springs from somewhere polite.  "That must be kind of rough."

"Eh, it's up and down," I say with socially appropriate, but contemptibly dishonest dismissiveness.  "Today it's a bit down."  Inwardly I recognize each of my throbbing joints, my swollen fingers, my angry headache, my churning bowel and lady bits - all the products of a lupus flare that reared spitefully over the previous day - without missing a conversational beat.  "How was your weekend?"

Ten moaning minutes of his chronicle of a stressful, tiring weekend with the family follow.  I listen and nod, interjecting encouraging and facilitating phrases, trying to feel sympathy for the sheer drudgery of his healthy, busy life.  When he has quite finished his mournful tale, wrapping with an account of his crushing fatigue post church-picnic, I hand him a toothy grin and cheerful maxim, excuse myself to the computer room to review my clinic patients once more, and gimp away.  As I leave, he dials his wife to ask about the kids, inquire as to her post-festivity state, and whine about how hard it is to have to work.

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Visit here for more info on Systemic Lupus Erythematosis.

First Impressions

"I'm just so glad you get to learn from me, Ms. Hettie!  I mean, what an awesome thing that I get to help out the next generation of doctors.  Oh, such a privilege!"

She is absolutely beaming at me as the anesthesia resident places her IV, her perfectly coiffed permanent shimmering in the low light of the PACU.*  This is the happiest I've ever seen a pre-op patient, bar none.

"It's a privilege to be on your care team, Mrs. Jones.  Thank you for the opportunity to learn from your health care," I smile back at her.  "We'll see you in the OR then, OK?  And Mr. Jones, we'll be out to chat with you when we've finished up.  Nice to have met you both."

I shake two warm hands, my day brightened by two warm souls, and head off to scrub in.

Mrs. Jones is still chattering warmly when the nurses wheel her in, grinning until she flies off to the land of MAC.**  What we see on hysteroscopy, though, is nothing to grin about.  Mrs. Jones' deformed uterine cavity is nearly filled to capacity with by a shaggy pink-white fluff with patches of black necrosis and hemorrhagic polyps - an abnormal finding for any woman, let alone a post-menopausal female whose endometrium should be thin, atrophic even.  Dr. J makes a whistling sound through his dentures as he begins to take pictures.  He sighs a little as he sets to the task of curettage, stripping great globs of ugly tissue from the uterine walls with quick, controlled strokes.

"It doesn't look great," he whispers at me with a sad wink.  "We'll talk about it later."

I wink reflexively and nod, knowing later will come with a side of "concerning for malignancy," and a dessert of "awaiting final pathology report."  I sincerely hope the case provides an after-dinner mint of smiles when all is said and done.

*PACU=Post-Anesthesia Care Unit
**MAC=monitored anesthesia care

Spontaneous

"Have you seen a spontaneous vaginal delivery yet?" a resident asks as she books by me, motioning with her head for me to follow.  I pend my post-op note and log off of the E-chart to run after her.

"No, only emergent C-sections," I answer, grateful she's thought to include me.  "I'll be happy to see something normal - something not high-risk."

She snorts.  "Umm, do they have you following room 3?  Oh, no, I guess you're on the back ward...  So, this may be a normal delivery, but this is a very abnormal baby."

She stops a moment before we reach the door.  "This is a very preterm baby with [insert extensive list of congenital defects]."  She softens a minute and looks straight at me.  "I just want to prepare you that this will be a very abnormal looking baby, OK? Once she comes out, I'll have you follow the NICU team with her and watch them do their thing.  Now, it may be pretty disturbing to watch, so if you have to step out, it's OK, don't worry about it.  You should know she has less than a 5% chance of survival, but the family is requesting that everything be done. Are you going to be OK with all that?"

I nod.  But, really, is anyone OK with that?

Mom is already pushing when we slip in, surrounded by a slew of stone-faced family and a veritable crowd of specialists, from anesthesiology to neonatal intensivists to maternal fetal medicine fellows.  Her affect is completely flat as she quietly follows the resident's instructions.  The baby is born a handful of silent pushes later, and I am struck by mom's unchanged expression as they whisk the blue, malformed baby away. Dad immediately wanders off, retreating to the corner where he chortles a bit at the Tyler Payne movie that was blarring all through the delivery.  I tear myself from the surreal scene and follow the NICU folks to a sterile room, where APGARs of 0, 0, and 2 are called, and every touch to the fragile newborn's skin results in a bloody rent.  A tiny heart stops and starts, stops and starts over and over; a tiny pair of lungs fills repeatedly, but not of it's own accord. Injections and IVs slip in and out. Equipment is tossed every which way as every last ditch effort at resuscitation is utilized, commands flying fast and furious at every person attendant.

Nearly an hour passes before they call it.

A nurse makes a few notes before laying aside her clip board, and everyone stands motionless, staring at the tiny little form on the little blue table.

Finally, the attending neonatologist clears his throat. He thanks everyone for their efforts, and the bustle of clean up follows. I kneel to pick up some rubbish, and feel the welling about my eyes spill over onto the floor. I disguise a dab, a sobby grimace with a fake cough as I toss the used packaging.

The neonatologist is not fooled.

"That was hard," he says quietly, his hand on my shoulder blade. "Do you want to help me bundle her?"

"I'd think Id like that," I say. He hands me a little pink hat and together we wrap her up in a fuzzy flannel blanket.