The Truth About Butterflies: A Memoir

by Nancy Stephan

  “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 21st 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.

  Chapter 21

  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.

  They stood around me in a semi-circle waiting, I suppose, for me to bow out gracefully and tell them to stop working on her. Instead, I stood up, walked around them, went into the restroom, and locked the door. I didn’t come out until I saw the reflections of their feet shuffling away.

  Once she was resuscitated and stable, Nicole was dialyzed. When I was allowed to see her, I pulled up a chair next to her bed and didn’t move until the next morning when the neurologist came to talk to me. “Your daughter is not going to wake up,” he said. “She can persist in this vegetative state, or you can remove the equipment and let nature take its course. I wish I had better news.” And then he left. I knew what he said was not the truth because Nicole and I had just signed our Christmas cards, and we had yet to put up our tree.

  After the neurologist left the room, the nurse came in. “Can I get you anything?” She asked as she reached for my hand.

  “I don’t think so,” I said.

  “We’re gonna take very good care of Nicole. She’ll continue to get her dialysis on schedule and all of her meds, so while you’re deciding what your next step will be, I don’t want you worrying about any of that.”

  I thanked her.

  Dr. Bihar peeked in and asked if he could talk to me in the hall. “Has the neurologist been in to talk to yet? He asked.

  “Yes.”

  “Well, we kinda knew from yesterday that it didn’t look good, didn’t we?”

  I answered his question with a question of my own. “Is it true that you guys think Nicole did this to herself intentionally so she could come to the hospital and get dilaudid?”

  He looked at me, speechless.

  “Because that’s what Reba said, that all of you had agreed that Nicole somehow did this so she could come here and get drugs.”

  He looked down at the floor and said, “I’m very sorry she said that to you.”

  And I waited for him to say that it wasn’t true, that Reba had misunderstood the conversation, or that the conversation hadn’t even taken place, but he didn’t. “I’m sorry,” he said again, “and I apologize on behalf of the team.”

  I wondered what other conversations they’d had about my daughter and what other labels they’d assigned her. Something shifted in me. For the two years that Nicole had been in their care, I had always used tact and diplomacy when talking with them. I didn’t want to do or say anything that might ruin her chances of getting a transplant. But all of that changed in that moment. I could feel myself bristling, my jaw tightening.

  “You’ve got some decisions to make,” he said.

  “I know I have decisions to make; I don’t need you to tell me that.”

  The atmosphere had grown hostile, and he knew there was no use continuing. He nodded and said, “I’m here to help you, so if you need anything, just have them page me.” He patted my arm and walked away.

  I went back into Nicole’s room and stood for a moment at her bedside. They had just changed her gown and bedding for the fifth time. She was sweating so profusely that every few hours they had to strip the bed and reapply the monitor leads that kept slipping off. The neurologist had said the thermostat in her brain was malfunctioning and her body was having difficulty cooling itself. I leaned down and whispered in her ear. I told her how very much I loved her; I wept and apologized for allowing this to happen. Of course, no mother allows disease to take over her child’s body, but to me, not being able to prevent it was the same as allowing it to happen.

  I told Nicole tha
t I was going home to shower and change clothes and that I’d be right back. I hadn’t left the hospital in over 24 hours, so when I walked outside, the sun was far too bright, the air far too cold. When I got home and walked inside, the place looked like a crime scene; the floor was littered with medical debris, the furniture pushed to one side of the room. Instead of cleaning up the mess, I flopped down in the nearest chair and cried.

  Once again, I faced a burdensome dilemma, and once again, I wanted to take my baby and run away. But I couldn’t run because there were decisions to be made. Nicole had already told me that if she were ever in this situation, not to let her go until I was satisfied in my own heart that she wouldn’t wake up. Being satisfied in my own heart was not asking too much; it was the least I could do.

  Thirty days. That’s the amount of time I gave the situation, but I didn’t tell Dr. Bihar. A few days earlier when we’d discussed Nicole’s prognosis, I’d told him I needed time to pray and think about how I should proceed. “Against all odds, people have woken up from comas,” I said.

  “Yes, but it’s rare,” he said. Then he said that if God were going to heal Nicole, He would just do it, that He didn’t need us to give Him time. “He is God, after all,” he said.

  I liked Dr. Bihar. He had a good heart and I knew he was genuine in his concern for Nicole, but I also knew he represented the interests of the hospital. They had made their prognosis, and they wanted Nicole either taken off the ventilator or discharged to hospice or to a nursing home. They didn’t come straight out and say this, of course, but it was very clear that whether Nicole was going to live or die, she needed to do it somewhere else.

  So when I decided to give the situation 30 days, I kept it to myself. Every morning when Dr. Bihar made his rounds and asked, “Have you decided yet?” I’d say, “No.” Still, he would press me for a specific time frame saying, “It’s very frustrating for us doctors when we don’t see an end in sight. We need to know that there’s closure in the foreseeable future.” But, much to my credit, I was no longer concerned with what frustrated the doctors and had learned, more importantly, that keeping things private and close to my bosom would be best for Nicole and me.