May 6th (again)

Today marks 3 years since Joe died. It's crazy, really. We were in NY for the weekend visiting my sister and her family. (pictures tomorrow) We talked about Joe, but it was not a sad weekend, by any means.

It has been requested that "Ghost Story" be reprinted, and today seems like the fitting day for that. Joe's doctor was haunted by Joe's death, and ended up writing the following story, which was published in a medical journal in the fall. I love this story because it shows just how much Joe's doctors did care. They really wanted him to make it.

So here is my final post about Joe's story. Thanks for reading it.

Ghost Story Ian Jenkins, MD

On my first day as a nervous, third-year medical
student, a nurse offered to orient me to the pediatric
ICU. I expected a litany of facts to memorize.
Instead, she pointed at each room in turn and
described the tragedies they had hosted.

"Room one: a little girl just died of meningitis
[brain infection] there. Room two: that boy'­s liver
transplant failed and he had a massive stroke." The
father sat holding the jaundiced hand of his
unresponsive son, whose
stapled abdomen held back
tense ascites [fluid filling the abdomen]. "His wife
died of cancer two months ago. Now he has no one.
Room three: teen with cystic fibrosis; sheíll be ok.
Room four, I will never forget. A teenager died of
leukemia there and refused all painkillers. He
wanted
to be lucid for his family, and they huddled on his
bed and sang "Amazing
Grace® until he died. Most
beautiful thing I have seen."

I had thought, "Beautiful? How can you even come to
work?"

Five years later, I remembered that conversation as if
it had just happened. I was the senior resident in
the medical ICU, it was 3 AM, and I was gathering my
thoughts amid the whooshes, beeps, and flickering
monitors of the sleeping unit. I was preparing to go
tell Betsy that Joe, her 31 year-old husband, needed
prone ventilation. Joe lay dying, of all things, from
chickenpox. He was receiving twelve infusions,
including four
pressors [blood pressure medicines],
sedatives, antibiotics, acyclovir, full strength
bicarbonate [combats acid], his 26th amp [or ampule]
of calcium, and liter number-who-knows-what of saline.
He sprouted two IVs, two central lines, a foley
catheter, endotracheal and orogastric
tubes, an
arterial line, and an array of monitor leads. His
blood pressure
plummeted*from a systolic of
80*whenever we interrupted his bicarb drip to spike
[to start or hookup] a new bag, so we knew moving him
might kill him. Every nurse raced to finish tasks on
other patients, preparing to help.

Joe'­s admission began, like several earlier ones, with
a chief complaint of "Crohn's flare." This time,
however, he had a new rash, and while John's ward team
suspected medications were to blame, they soon started
acyclovir. In days, hepatitis, acute renal failure,
and pneumonia prompted his ICU transfer. He required
intubation hours later.
His course since had been
like watching a pedestrian struck by a truck in slow
motion: a sudden, jolting, irreversible cruelty*drawn
out over hours. Anasarca [the diffuse swelling] had
folded his blistering ears in half and forced us to
revise his endotracheal tube taping
three times so it
would not incise his cheeks. He had
unremitting
hypotension [low blood pressure]. His transaminases
climbed above 6,000 and his creatinine to 6 [measures
of liver inflammation and kidney failure]; his
arterial pH dropped to 7.03 and his platelets fell to
16,000 [both commonly fall with infections]. His
partial pressure of oxygen sank below 60 mm Hg despite
paralysis, maximum PEEP and 100% oxygen [we were
unable to keep his oxygen at goal despite best
efforts]. Crossing that terrible threshold felt like
drifting below hull-crush depth in a submarine. I
waited for the walls and windows of the ICU to groan
with the strain as
disaster neared.

My intern followed me to the waiting room where Betsy
slept. She hadn't left the hospital in days. I knelt
beside her cot and woke her, and she supported her
pregnant abdomen her hand as she rolled to face me.
We smiled. Then she remembered where she
was.

"Is something wrong?" she
asked.

"No, he's about the same. But the other things we
tried didn'­t help. We need to do what I mentioned
before*turn him over so he can use his lungs better."
She nodded. "We're very careful but he has so many IV
lines right now. If he loses one, he could get much
worse. So I wanted to make sure you spent some time
with him now, just in case."

Her eyes teared. "He could die?"

"Just a small chance. But possible."

"And if it works, he might get better?"

I paused. "He's very sick."

"There are other things you can do?"

"We have to really hope this works."

"This isn't supposed to happen. I don'­t know if I can
raise two children without Joe. I can't be a widow
at 29." I sensed I could have talked her*sleep
deprived and stunned*back into sleep, into a
conviction her nightmare would pass by morning.
Instead I squeezed her hand
and listened.

"We need to do this, ok? You'll have ten minutes to
talk. Remember how his blood pressure rose when they
cleaned him? He's still in there. I believe he can
hear you. So you tell him to keep fighting."

Betsy wiped her eyes and searched for her shoes. As
we walked briskly back to the unit, I composed myself
and told my intern, "I'll be 29 in 3 weeks."

"Me too. What day?"

"May 28th."

"Same as mine," he said.

It took 25 minutes to prone Joe with every nurse
assisting, but the maneuver went well. His
oxygenation improved, but his relentless decline
resumed within hours. Sometime the following
afternoon, I went home to sleep, and Joe's blood
pressure eventually dwindled to nothing, leaving only
sinus tachycardia on the monitor [the heart electrical
system working but no blood pressure] and the rhythmic
puffs of the ventilator.

Then, within two weeks,the
resident team managed a series of unexpected
tragedies: we lost young mothers to acetaminophen
overdose and lung cancer, and cared for two young
adults with septic shock and a perimenopausal woman
for whom the cost of pneumonia was her first and
probably only pregnancy.

Five years before, when I first stepped into an ICU, I
imagined the residents held a dozen lives in their
hands and faced critical illness at all hours*alone.
By the time Joe died of disseminated varicella, I
realized the truth was far from that vision. Joe'­s
nurse had worked in the ICU as long as I'­d been alive
and expert respiratory therapists guided his
mechanical ventilation. I had co-residents and
consultants*even a rabbi when I guided a family
meeting on declaring "CPR not indicated." Our
institutionís overnight attending assisted me
throughout the night, and the primary attending drove
in at 2 AM to supervise nitric oxide
therapy. At no point did I ever
care for Joe alone.

Instead, the challenge lay in facing the winning
smiles of our patient Joe and his young son, waving
from a month-old photo taped by the head of his bed,
and a young wife refusing to leave her increasingly
unrecognizable husband as his body failed, despite her
conspicuous, 8 month pregnancy. And in the surprising
futility of all of our interventions. Perhaps most
of all, in the persistence of the sights and sounds
and smells of that night, and many others. I've seen
the ___expression a pathologist makes on learning his
daughter has anaplastic thyroid cancer [99% fatal
cancer, something a
pathologist knows best]. I've
heard the sound a daughter makes when her mother has a
ventricular free wall rupture [heart ruptures] while
welcoming us into her room. I've smelled a teenager
who burned to the bone while conscious yet pinned in
his car. I'­ve felt the crackle of subcutaneous
emphysema [air in the skin]after chest tubes for
malignant pleural effusions [fluid in lungs from
cancer], so severe the patient could not open his eyes
or close his hands. And the papery skin and tremulous
handshake of a man after my news of his wife'­s
prognosis promised the 64th year of their marriage
would be the last.

Far from alone, I spend much of my time in the company
of these ghosts, as must many health care workers.
How we make our peace with them is up to us. With
tears? Humor? Alcohol? Sometimes it is by numb
indifference; from most of the businesslike
discussions I'­ve heard physicians hold, you
might wonder if they even existed. Or, we can make our
peace with words. I am grateful for a chance to speak
with Betsy some days after Joe died to assure her that
while we did ask Joe to fight, in the end no effort
could have saved him. I am grateful she later wrote
us to celebrate the healthy birth of their second son,

Joshua.  She assured me Joe would live on for her in
their sons, and live on for them through her memories.
Her strength helped me welcome Joeís ghost, and many
others, into my life.

After five years of clinical medicine, I finally
understood the lesson I received from the pediatric
ICU nurse.  Our ghost stories celebrate healing, or if
there was no healing, then release.  At the very
least, great tragedy reminds us of the great meaning
of our calling.

(For Joe and Betsy B., and everyone at the Beth
Israel Deaconess Medical Center, Boston, who helped
care for them them).