The Truth About Butterflies: A Memoir (19 page)

If the
mother says
:
Nicole is always thirsty.

Your
response:
Your daughter drinks too much.

Rationale:
The mother will think you’re talking
about the same thing, even though you’re not. *Remember: the daughter doesn’t
drink water because she’s thirsty; she drinks it because we’ve told her not to.

If the
mother says:
I’m telling you, Nicole
does
take her medicine.

Your
response:
How do you know?  Are you with her 24 hours a day?

Rationale
: Self-explanatory

If the
mother says
:
What this doctor has reported to you is not true.

Your response
: What reason does he have to lie? He
doesn’t know you or your daughter.

Rationale
: Our perspective is the
reality, and it’s the only one that matters.

If the mother says:
Nicole is tired, I’m
tired, and I don’t know how much more of this we can take.

Your response:
Say nothing.  Keep a poker face, and
look down at your watch every 15 seconds.

Rationale:
She’ll take the hint.  Besides, the
girl’s situation is ultimately the mother’s problem; don’t let her make this
our problem.

If the
mother says
:
Nicole hates dialysis.

Your response
: If your daughter doesn’t like what’s
happening to her, she can go see a psychiatrist.

Rationale
: All the other patients are happy to be here,
so obviously
she’s
the problem. 

If the mother says:
If I can just give you
some context, maybe you’ll understand why this is so hard for her.

Your
response:
Nicole needs to do what she’s told.

Rationale
: We don’t have time for
this.

If the mother says
: I’m sorry Nicole
refused the procedure, please give her another chance.

Your response
: The mother is desperate, she has no
bargaining power, so you can pretty much do and say whatever you want.

Rationale
: We’re the doctors,
dammit!

Rule of
Thumb
:
Whatever the mother says, always disagree!

I could talk
about the day I received the letter from the transplant clinic two months after
Nicole’s death, and the panic I felt in realizing I’d forgotten to tell them
she was gone.  I could explain my horror to find that the letter was not an
approval for the transplant as I’d expected, but a rejection. 

If I thought you wouldn’t judge me, I’d tell you what I considered
doing to my own flesh after reading that letter and the shock and embarrassment
I felt that such a thing had so effortlessly entered my mind.

I could also mention that with the arrival of this rejection letter,
I began hating the doctors and how they had colonized every corner of our lives
for two solid years, but now that everything was decimated, and shattered, and
hanging off the hinges, they’d simply returned to their own pleasant countries,
leaving me here alone to sift through the rubble.

If I had the
stomach for it, I could tell you that after I read that letter, I immediately envisioned
Nicole lying in her casket;
her skin dark and dry; her face, swollen, the backs of her
bony hands—which were folded in front of her—riddled with needle marks.  I
could describe the scab from the oxygen sensor staring up from the middle of
her forehead like the eye of a Cyclops, or how the tape that had held the tube
in her throat for over a month had left rope-like burns up each cheek, like
she’d been slashed across the face with a whip.  I could mention the lady at
the funeral home who asked, “Was your daughter in an accident?”  And how I
wanted to say, “Yes, you could call it that.”

I could say
all these things, but you might think I’m just bitter because my daughter is
dead or that the grief has made me unreasonable.  So instead, I’ll just say
that Dialysis was an enemy my daughter didn’t want to fight and that those who
worked the ropes and pulleys failed to give her the support all good fighters
of this sort need, and that I myself am guiltiest of all because every time she
was pummeled and lay bleeding on the ground, I insisted that she get up and
keep fighting, and every time she cried and said,
“Ma, I
can’t do this,”
I insisted that she could, that we could-together, and that
she should keep fighting because it would all pay off in the end. But to reach
"the end" and discover that there had never been a cavalry
coming to save us, that those two horrid years had been
for nothing, and that if Nicole weren’t already dead, this rejection
letter would’ve killed her, was too much for me to bear.

I
would
like to tell you, though, that some of those who worked the ropes and pulleys
did so with one hand so that they could hold Nicole and me close with the
other.  I can tell you that they went above and beyond what was required of
them to make sure we didn’t get caught up in the machinery.

If I had the
time, I’d tell you about the nurse, the same age as Nicole, who spent every
lunch break at Nicole’s bedside, or the doctor who said, “Nicole’s afraid, and
she has every right to be. But I’m not going anywhere; when she’s ready, I’ll
be here.”  I could tell you about the dietician who gave me her daughter’s phone
number so Nicole could have someone to talk to.  I can tell you about the nurse
from the dentist’s office who up and called me at work because “Nicole is on my
mind, and I just wanted to see how she’s doing,” or the dentist himself who
said, “Here’s my home number; give me a call if she gets into trouble during
the night.”  And I haven’t even mentioned the doctors and caregivers who, once this
was all over, decided to stay on this journey with me and have become my friends
and confidants.  And it’s for all of these selfless, loving individuals that
Dialysis should thank its lucky stars.

After a year
of fighting Dialysis, Nicole took a blow from which she’d never recover.  On
September 14, she was admitted to the Coronary Care Unit (CCU) with chest pain
and shortness of breath.  She was diagnosed with pulmonary hypertension and
stayed in the CCU for a month. “We’ve done tests to see what’s causing this,”
the pulmonologist said, “but they’re turning up nothing.  We’d like to send her
to a specialist at the research hospital.”

 They
transferred Nicole to the research hospital on October 11, and the admitting
physician there said that the next day, they would move her out of ICU to the
regular unit so that the specialist could begin his evaluation. 

The next
day, October 12, I left work early and went to the ICU just as Nicole was
finishing lunch.  They moved her to a regular room, and within minutes of
taking a shower, she collapsed on the floor.

I was
sitting in a chair behind her as she brushed her hair.  She had been off the
oxygen for about 45 minutes and seemed to be doing okay.  Just as she put the
final pin in her hair, she turned to me and said, “You might not want to sit
behind me. I’m getting ready to give the gift that keeps on giving.”  I
giggled, and just as I did, she stumbled a little as if she were losing her
balance.

“Something’s
wrong, Mommy,” she said.  I could see that she was going to fall, so I stood
behind her.  Then she shrieked, “Mommy, something’s wrong.”  She was gasping
and trying to scream, but she couldn’t catch her breath.  I had grabbed her
under her arms and eased her to the floor.  Her back was against my legs.  I
reached over her head and pulled the emergency cord just inside the bathroom
door.  When I turned, I saw that her eyes were rolled back in her head, the
catheter that was in her neck was out and lying on the floor, and blood was
pouring from her neck.

I eased
Nicole to the floor and ran into the hallway screaming for help.  The nurse
came out of an adjacent room and said, “What’s wrong?”  I couldn’t answer; I
just pointed down to the room.  She ran into the room, and within seconds came
out into the hallway and yelled, “Call a code!”  

Instantly
after the code was called, swarms of people descended on the room.  They were
running, rolling equipment, they were on phones; they were talking to each
other and over each other.  The ICU nurse who had brought Nicole to the room
less than an hour before was looking confused.  I did the only thing I knew to
do; I began to pray.

I could hear
the doctors requesting reports, lab values, recent tests, questioning the nurse.
 I felt an arm around my shoulder.  I opened my eyes, and two chaplains
introduced themselves.  One asked me if I wanted to go sit in the family room. 
I told her that I didn’t, that I needed to hear and see what was happening. 
The very thought of being shuttled off to an empty room where I would wait for
the doctors to come deliver the news gave me a cold, morbid feeling.  “It’s
quite alright for you to stay here,” she said.  And someone brought me a chair
and some water. 

Soon
security officers came, and between them and the chaplains, they comforted me. 
They held my hand, rubbed my shoulder, and the chaplain prayed with me.  “Is
there someone I can call for you?”  The chaplain asked.  There was Eunice, but
I didn’t want them to call her.  Her sister Vivian was battling cancer, and
that was enough to deal with.  My friend Bridgett, who worked at the hospital,
had just left about an hour before.  She was seven months pregnant and
certainly didn’t need the stress.  “Surely there’s someone we can call,” she
persisted, “just someone who can come sit with you?”  I gave them Eunice’s
number.

Soon, the
people in the hallway began to clear the way, and I saw the stretcher being
rolled out of the room.  There was a tube in Nicole’s mouth hooked to an air
bag.  She was covered toe to neck with white sheets.  At a very rapid pace,
they whisked her away, people followed in a horde, and the once chaotic scene
became very quiet.  “There’s a special waiting area right outside of her ICU
room where you can wait,” the chaplain said.  But I wanted to get her things
out of the room first.  The chaplain said she’d wait for me at the nurse’s
station. 

In the room,
all of the furniture had been pushed to one side; the floor and baseboards were
covered with blood.  Two nurses hurried in and told me to go with the chaplain
and that they would gather Nicole’s things, but I wanted to gather her things
myself.  Nicole’s house slippers were splattered with blood, and I told the
nurse that I didn’t want them.  She dropped them in the trash. 

Then I
noticed a towel on the floor completely saturated with blood.  I was startled
by how much of Nicole’s blood was in the towel.   For some reason, I wanted to
keep it.  It was too much of my daughter to simply throw in the trash.  I
picked up the towel, and the nurse reached for it, but I pulled it back.  She
looked at me in a strange way and said, Honey, you don’t want that.”  But I
did
want it.  “Will it be thrown away?”  I asked her.

“We’ll take
care of it properly,” she said. 

I insisted
that I needed the towel, and the more I explained, the more disturbing it began
to sound, even to me.  She held open a plastic bag and told me to drop in the
towel, but I couldn’t. She reached for the towel and tried to pull it from my
hand.  When I wouldn’t let go, she grabbed my wrist and began shaking it until
I let it go.  She turned to the other nurse and said, “Take her out of here.”

I apologized
and told her that I didn’t know what had come over me or why I wanted the
towel, but she was no longer speaking to me, only to the other nurse, “Get her
out of here.”

When I made
my way to the ICU, I was able to sit in a little cadre just outside her room. 
It was like her own little back porch.  I could hear the buzz and whir of the
ventilator and the doctors and nurses inside talking.  Soon, one of the doctors
came out and asked me to explain what happened.  “Are you sure the catheter in
her neck didn’t come out before she fell?”  He asked.

“I’m
positive.  The catheter was in her neck when she started to fall.  It must’ve
gotten pulled out when I tried to catch her.”

“That
doesn’t explain why her heart stopped, and none of the tests are giving us clues. 
She didn’t have a heart attack; her lab work is okay; she didn’t have a stroke;
we’re just at a loss.  However, if the catheter somehow came out and caused an
air embolism, that would explain everything.”  

Then other
doctors came, one by one, asking me to explain what had happened in the room. 
Each doctor said it was crucial for them to know if the catheter came out
before or after she went down.  Then each of them reminded me that if the
catheter came out before she went down, it would explain everything.