The Truth About Butterflies: A Memoir (21 page)

“But I’m not
hungry.”

“Too bad;
you’re potassium is low, and you need to eat something.  We’ll go somewhere
nice, and then I’ll take you to dialysis.”

I went to
her room and got a jogging suit for her to slip on.  When I gave it to her, she
attempted to put on the trousers, but her legs were hurting so badly that she
couldn’t lift them.  I knelt in front of her and helped her lift her feet.  “I
got it from here,” she said.  I turned to reach for the phone.  I would call
work and tell them I’d be late. 

As she
struggled with her pants she asked, “So Vegas is out of the question for my
birthday?”  We both chuckled because she already knew the answer to that. 

Since her 21
^st
birthday, she’d wanted to go to Las Vegas.  I remember the first time she asked
me. 

“Okay, I’ll
put in my vacation request, and we’ll go to Las Vegas.”

“No,” she
said.  “Don’t put in for vacation.  Call and tell them you won’t be in for
about a week.  Be spontaneous for once!”  She’d insisted. 

“Okay,” I
said.  Not wanting her to get the best of me, I continued planning.  “We need
to make hotel reservations.”

“No
reservations.  We gas up the car and go.”

“Drive?”

“Yes.”

“All the way
to Vegas?”

“Yup.”

I had no
intentions of taking a trip to Vegas without some kind of planning, but I was
amused nonetheless.

“Where will
we sleep when we get there?”  I asked.

“Who goes to
Vegas to sleep?  When we get sleepy, we’ll get a room.”

“What if we
can’t find a room?”

“We’ll sleep
alfresco.”

“What if the
car breaks down?”

“We’ll thumb
it.”

“What if
some crazy trucker kills us?”

“Then it’s
our time to go.”

You’d
really have to know the two of us to understand how completely normal this
conversation was, her wanting to hit the road immediately and my wanting to go
through our luggage one last time to count and re-count our underwear. One
thing or another came up, and we never made the trip.
So every year since
2001, she had been hinting at the Vegas trip.  I stood thinking about how badly
she wanted to go but knowing she was too sick to enjoy it.  I stood with the
phone in my hand thinking about Vegas when Nicole, in a voice just above a
whisper, said, “Oh no…” 

I turned to
see her lilt slowly to her right side and then roll onto her back.  Her eyes
were rolled upward.  With the phone already in my hand, I dialed 911.  I
attempted to pull her by her legs off the bed and onto the floor so I could do
CPR.  Instead, my bed, being on casters, began gliding across the wooden floor. 
I grabbed Nicole by her wrists and pulled her from the bed to the floor. 

“My
daughter’s not breathing!” I yelled into the phone.  Her lips were already
turning blue.  As I started the chest compressions, the color came back into
her lips immediately.  In the distance I could hear the repetitive, desperate
cries: “Jesus, please help me!”  We were the only ones in the house, and I
realized that the cries were coming from me. 

Nicole began
taking random breaths.  Between her breaths, I would wrap my mouth around hers
and breathe as hard as I could.  I knew that at some point, I would need to
unlock the door for the EMTs.  I decided that after she took her next big
breath, I would run and open the doors, which I did.  I could hear the sirens
blaring from afar, and at the same time I could hear someone coming through the
house. 

Soon there
was a man kneeling next to me.  He instructed me to stop as he felt for a
pulse.  “Continue,” he said.  I continued with the chest compressions while he
readied the defibrillator paddles.  Another EMT rounded the corner and made his
way into the bedroom.  He pulled me away and took over.  A third EMT asked me
to come out of the room. 

I walked
with him down the hallway and into the living room, which was filled with
emergency personnel.  There were people everywhere, and they all had questions:
Are you her mother?  Had she been sick? Had she been complaining of anything
before it happened?  Were you with her when it happened, or did you walk in and
find her? How long had she been down before you started CPR?  Does she have any
medical problems?  Do you have a list of her medicines?  

My
brain, which held the answers to all these questions, was spinning like a top,
much too fast for me to reach in and pull out even one answer.  
Above their voices I
strained to hear what was going on in the bedroom but couldn’t.  I shut my eyes
and began to pray.  “Is there anyone we can call for you, a husband?  Parents? 
Do you have other children, ma’am?”  I shook my head
no. 
My whole life,
my next of kin, my emergency contact was lying in there on the bedroom floor. 

Soon they
suggested that I head to the hospital.  I grabbed my keys and purse and ran out
the door.  Emergency vehicles lined both sides of the road.  I prayed all the
way to the hospital. 

When I
arrived, a nurse and a social worker ushered me to the family waiting room.  They
said that Nicole hadn’t arrived yet but that someone would keep me informed of
everything that happened once she did. 

The social
worker returned and said that Nicole had arrived, and doctors were working to
restore her heartbeat.  She said that she would keep me updated and wouldn’t lie
or sugarcoat anything. 

Soon, the
doctor came and said that Nicole had a heartbeat but that her condition was
very critical.  “What’s been going on with her?”  He asked.  I told him about her
severe stomach trouble—nausea, vomiting, and diarrhea—and that her appetite was
very poor.  Because she wasn’t eating but was still taking the medicine that
lowers potassium, I suggested that her potassium was possibly too low.  “With
dialysis patients, the concern is always with it being too high,” he said. 

Once they
got Nicole situated, a nurse escorted me back.  He tried to prepare me for what
things would look like.  “She has lots of tubes, and there’s some blood around
her neck.  You know, her veins are very bad, and the EMTs couldn’t get an IV
in,” he said.  Once inside the room, I heard the familiar hum of the ventilator
and the bleeping monitors; I saw the tubes in her mouth and the IV in her neck. 
She was totally unresponsive except for a random twitching.

Reba, the
nurse from the nephrologists’ office, came into the room and asked me what
happened.  I explained like I had for every doctor, nurse, and EMT who had
asked before she had. “You know,” she said, “all of us on the kidney team are
in agreement that Nicole did this to herself on purpose so she could come to
the hospital and get drugs.” 

My body went
numb as if the blood had drained and pooled in my feet.  The lung doctor was
standing at the foot of the bed with the chart, and she immediately looked up
at me—a natural reaction, I guess—but out of courtesy, she quickly looked away
and continued with her paperwork. 

At first, I
was too angry to speak, and when the words finally came out, they were very
weak words. “That’s not true,” I said.

“You don’t
think so?”

“I know so.”

“But aren’t
you
the one who said she had a problem with dilaudid?”

Some weeks
before, I had asked the nurse at the dialysis center to have the doctors give
Nicole something other than dilaudid for pain when she was in the hospital.  I
felt she was asking for it too much.  It’s a highly habit-forming drug, and
developing a dependency on it, I thought, would be one more hindrance to Nicole
getting the transplant.  I thought telling the doctors was the responsible
thing to do; I thought they would act judiciously with the information. I had
no idea they would turn and use it against me.

At that
moment, I wanted Nicole to wake up so I could tell her that she had been right
all along, that I never should’ve trusted the doctors.  I never should’ve
opened my mouth and given them one iota of information.  When they came asking
questions, I should’ve sat, like she did, staring off into space and shrugging
my shoulders.

After
Reba left the room, the lung doctor pulled me aside and said, “I don’t know why
your daughter’s heart stopped today, but it doesn’t have anything to do with
the kind of care I’ll give her.  I just want you to know that.”
Another nurse walked in
and handed me a silver cross necklace stained with blood.  “Nicole was wearing
this,” she said, “and I didn’t want it to get lost.” 

Dr. Bihar, one
of the kidney doctors, came into the room and asked if he could speak with me
in the hallway. 
Dr. Bihar was young and hip and very
easy to talk to. I was fond of him, and so was Nicole.
I followed him out of
the room and while he was talking, all I wanted to do was tell him what Reba
had just said to me.  But I couldn’t manage to repeat the words. 

He said he
was very concerned about the amount of time Nicole was down before she arrived
at the hospital.  “Do you see that twitching she’s doing?  That concerns me
because it indicates a possible problem with her brain.  I’ve never seen Nicole
this sick,” he said.  Though it was
his
first time seeing Nicole in this
condition, I had lived it twice before at the hospital downtown.

After the
doctor explained his concerns, he asked if there was anyone he could call for
me. 

“No,” I
said. 

“No one?” 
He asked again.

“No.”

He looked at
me in a strange, sad way, the way one might look at a wounded bird.  He reached
out and touched my arm, “Let me know if you need anything.” 

I wrapped
the delicate necklace around my hand.  As I gazed at it, I wondered if the
blood on it meant anything, if God was giving me some kind of sign.  I went
back into the room, sat in the chair next to the bed, and waited for them to
transfer Nicole to the Coronary Care Unit.

As they
transferred Nicole to CCU, I sat in the hallway adjacent to the elevators. 
Every muscle in my body felt like a rubber band stretched to capacity.  The
nurse came out and said that once they had Nicole situated, I could come back
and sit with her.  I saw one of the dialysis nurses coming down the hallway
pushing the portable dialysis machine.  When she saw me, she came over and said
she was on her way to dialyze Nicole and asked what had happened.  I repeated
the story.  “Have you been back there yet?”  She asked.

“No, they
said they would come get me, but it’s been almost two hours.”

“I’ll find
out what’s going on when I get back there and have someone come talk to you.”

Another 45
minutes passed with no word.  As I sat, I heard a pounding coming from the
elevator.  Someone was stuck.  By the time the maintenance team arrived, though,
the elevator had begun working again, and those who were trapped were free and
on their way. 

When the
maintenance men arrived, they couldn’t replicate the problem.  “Ain’t a damn
thing wrong with this elevator; somebody’s trying to waste our time,” one of
them said.  At that moment, I stopped praying for Nicole and prayed instead
that when the maintenance guys got on the elevator to go back down it would
stall again and trap them for the rest of the afternoon.  Just that simple
incident would brighten my day. 

Then, over
the PA system, I heard, “Code Blue…Blue Tower…Fifth Floor…Room 5207.”  I ran
down the hall and slipped into the unit when the doors opened for someone
else.  Once inside, I saw a crowd gathering outside one of the rooms.  I headed
in that direction, but when they saw me coming, they met me halfway and ushered
me back out of the unit.

I returned to
my seat in front of the elevators.  I no longer tried to hold back the tears,
and they poured from all four corners of my eyes.  Shortly, two doctors emerged
from the unit and headed in my direction.  One was Dr. Bihar, the other a
doctor I didn’t know.  They were accompanied by Reba.  “They’re still trying to
get a heartbeat,” Dr. Bihar said.  I didn’t respond because there was nothing,
really, for me to say.  “She’s in very, very critical condition,” he
continued.  I sat quietly.  Then the other doctor, I presume with the
intentions of cutting to the chase, said, “Look, your daughter is very sick,
and you need to come to terms with the fact that this is her time to go.”  I
had been looking down at the floor, but when he spoke I had the overwhelming
need to look up at his face.

I studied
the narrow bridge of his nose, his blotchy face, his thin lips and balding head. 
I wondered if he’d ever loved anyone in his entire life.  My world had shattered,
and he wanted me to sweep up the pieces before they’d even stopped spinning on
the floor.

I needed
time to absorb what was happening, and if all were indeed lost, then I needed
time to pick up each piece and run my fingers along the jagged edges; I needed time
to examine the colors and patterns and commit them to memory before they were
gone from my sight.  I needed time, and as her mother, I felt I had a right to
it.