It is the Pediatric Intensive Care Unit, but they call it “Pick-You.” And you wonder over and over why you’ve been picked.
Last night, I dreamt that a little boy crawled out of my kitchen cabinet. His thin arms and legs hung out of his denim overalls. Who are you little boy?
I bent down and looked into his yellow-gray face. Are you looking for your mommy?
You’re not allowed to ask, “Where’s your mommy?” It’s against Federal regulations on privacy. But there’s no real privacy in the Pediatric Intensive Care Unit. Everyone calls this place “Pick You,” spelled P-I-C-U, and you ask yourself over and over why you have been picked.
Are you Billy, little boy? I wanted to stroke his blond hair, which was matted and flat on one side from lying in bed too long. He couldn’t answer because of the tube. You could blink for ‘yes’ like Ariela does, I told him. But the dark orbs sunk into his face were motionless. Then the dream faded.
Billy was the boy in the room next to Ariela’s, and I never saw exactly what he looked like. All I saw was the side of his head with the tube sprouting out of his mouth. His small frame covered in white sheets. He might have been two or three years old. Machines crowded his room flashing neon numbers and graphs. Red light. Green light. Red light. Green light.
His parents had taped a photograph to the side of his crib, but the crib wasn’t close enough to the sliding glass doors to get a good look, and I didn’t want to stare. I hate it when people stare at Ariela. She has a sense of privacy. Ariela is not even her name. She and I agreed I wouldn’t use her real name, though Ariela is a name we almost gave her.
I can’t remember many things about the seven weeks in 2003 when Ariela was in PICU. The first two weeks are particularly vague. But this I do remember: When she came out of surgery, she had a big tube down her throat. No one told me that they were going to leave her on a ventilator. Or, did they tell me and I didn’t hear? There was another tube attached to a pump draining fluids and blood from inside her chest, and another sticking out of her back. A catheter to drain her urine. An oxygen sensor taped to her foot. An IV stuck in one of her hands. Did she have one hand free?
The day before, at our pre-op appointment, I had asked the surgeon about the possibility of complications. “Don’t worry,” the surgeon said. “I’ve done hundreds of these, and only one kid had to leave the hospital on a respirator, and he was much more involved than Ariela.”
She needed the surgery to sit up, I reminded myself.
Back when she was seven, in fact, this same surgeon had told me that she would eventually need spinal surgery. I didn’t like what I heard, so I stopped taking Ariela to see him. Eight years passed before we were told we couldn’t wait any longer, and I took Ariela back to him. “Her spine is twisting like a pretzel,” he said. The X-ray showed an “S” curve greater than ninety degrees. “That’s not possible,” I told myself, as Ariela sat, bent to the side. I could barely squeeze my finger in the space between the top of her right pelvis and her last rib, yet I still didn’t believe it.
Still, just for a moment at the pre-op meeting, I thought about leaving. Then a resident walked in to review the risks. He looked up from the consent form only to tell me not to worry: “Ariela’s surgeon is the best pediatric orthopedic surgeon in the Bay Area.” But Ariela is different, I wanted to tell him. Just look at her. At fifteen, she weighs all of thirty-eight pounds. Did you read the hundreds of pages of her medical records? The quadriplegia is obvious, but do you know she has seizures? Does anyone know that she has a sleep disorder? Apoxic events diagnosed right here in this very hospital? That she’s nonverbal?
We knew the risks. When Ariela was six, she had surgery on her right hip. Surgery the doctor had said was urgent. “She must be in great pain,” he told us, as Ariela sat smiling on her father’s lap. Nine years later, she still had not regained the ability to bear weight on her right leg.
This time I told Ariela that we were going to fix her back. “You can watch all the videos you want, and you’ll be home in eight days.” We counted out eight days from May 22 and circled it on our calendar. “Dad and I will be there with you the whole time.” The night before the surgery, we cuddled in her bed. I could rest my chin on top of her curls. Her S curve fit neatly against my chest.
The operation took more than ten hours. My husband, Gary, found a seat in the waiting area, opened his laptop, and kept himself busy. I opened my book. I read the same sentences over and over. I wanted Gary to look up, so I could ask him again if we were doing the right thing.
In the afternoon, three friends came to sit with me in the waiting room. Did I want to be distracted? Ariela was lying on a cold table, sliced apart, a rib removed, and steel rods inserted into her back? My friends said, “La, la la.” I nodded my head as though I was listening.
Afterwards, she shared a crowded room with three other children. I stood over her bed and watched her chest move up and down, up and down, in a steady rhythm that was not her rhythm. The surgeon came in his green scrubs, a mask around his neck, and told us that everything went well. “We just gave her an extra dose of morphine. She won’t wake up for a long time. Go get yourselves something to eat.”
I grabbed the closest nurse. I used my best professional voice, but it came out shaky. “Please call me if she stirs, even the slightest bit,” I said. “I don’t want her to startle. She could have a seizure.” I taped a scrap of paper — my cell phone number, Gary’s cell phone number, and my pager number — onto the foot of Ariela’s bed.
“Don’t worry, we’ll take good care of her.” The nurse gave me a pat on the shoulder. I didn’t want Ariela to wake up surrounded by strangers. I wanted her to see my face first. I had promised her I’d be there. “Just call me right away,” I said. I stood over the nurse as she copied our phone numbers into the binder with Ariela’s name on the spine.
The hospital cafeteria was closed. We walked to the café across the street and sat on their patio, though I wasn’t prepared for the chilly spring evening. We moved our table closer to the propane heater. I sat with my arms across my chest. On a different occasion, this could have been a nice place, even romantic. Other people were enjoying themselves.
A pudgy toddler was running around the patio, playing peek-a-boo with her father. Her giggles drew smiles from nearby diners, Gary among them. “Ariela could never do that,” I said to Gary, knowing that’s what he was thinking. He nodded and took another sip of beer. When the food finally came I couldn’t swallow. We took it to go and then tossed it in the trashcan outside the entrance to the hospital. No food allowed in PICU.
We got back to find Ariela awake. Her face was swollen. When she saw me, she closed her eyes. Was she shutting me out or going to sleep?
“Why didn’t you call us?” I was half crying, half spitting my words out at the nurse. She wasn’t the nurse we had left Ariela with. There had been a shift change. “We wanted you to enjoy your dinner,” the new nurse said. She did not look up from her paperwork.
Parents, siblings, and an assortment of visitors were parked by the three other beds in the room. Standing room only. I pulled the privacy curtain around one side and bent over the bed rail to kiss Ariela. I stroked her hand.
“Tomorrow will be a better day,” I told her.
The day after Ariela’s surgery they took out the endotrach tube and took her off the ventilator and moved her to the third floor. I heard her nurse tell another nurse that they needed the bed, that “There’s another one coming in from OR.” Ariela was supposed to be in PICU for two or three days, so I felt as if we had graduated early. Even her surgeon seemed a bit surprised.
I was delighted to be out of the PICU, though, in a bigger room on the general floor where there were built-in beds for parents to spend the night. Ariela had been in several hospitals, but this one was the most beautiful, with outdoor patios and gardens on every floor. “We’ll go outside and get some sunshine as soon as you’re able to sit up,” I told her.
Late in the afternoon of the third day, something happened. I can’t remember exactly how it unfolded, but Ariela’s oxygen level dropped. She lost color. One minute she was pink, the next minute pale. Breathe, Ariela, breathe.
Gary stayed the night. He sent me home, saying I was useless. Then he called me at 3 or 4 a.m. Something had gone wrong. When I returned to the hospital, Ariela was back in PICU, this time in a private room. She was on a ventilator with that tube down her throat. She was awake and alert in spite of the pain medication. “Oh, Ariela. I’m so, so sorry. This wasn’t supposed to happen.” I kissed her forehead and touched my cheek to hers. “This really sucks. Doesn’t it?”
Ariela opened and closed her eyes in a long, deliberate blink, her sign for “yes.”
“Ariela, do you hate me?”
Ariela gazed back. With her eyes, she reached out and wrapped herself around me. She had so much more patience and acceptance than me. In spite of all the assaults on her body through the years, all the surgeries, invasive procedures, and convulsions, Ariela persevered. I caught the opalescent pool collecting at the corner of her mouth. “Don’t worry. I’m going to get you out of here. I promise.”
White coats huddled. They sent an envoy, a resident named Janet, to talk to me. I thought she wasn’t much older than Ariela. Her mouth moved, but I didn’t hear everything she said. I caught “collapsed lung,” “pneumonia,” “infections,” “inflammation,” “blocked airways.” Large black eyeglasses outlined the resident’s face and distorted the size of her eyes.
“Wait a minute. Where’d she get that stuff? She didn’t have those infections when she came in here.”
The black glasses nodded. “It happens sometimes.”
I called my brother, Jack, in El Paso. He’s an orthopedic surgeon. “Forget the resident,” he told me. “Go talk to the attending. Or at least the fellow.” I was bewildered. “What’s an attending? Attending what?”
Jack’s voice was calm and directive. “Go outside the entrance to the PICU and the names of the attending physicians are usually posted by the doors.”
“Why didn’t I take my daughter to El Paso for her surgery?” I asked myself.
Cell phone in hand, I followed instructions, found the names, and told my brother. “The one listed first is probably the chief. Try to connect with him, and find out what his plans are for Ariela. Sounds like they may need to bring in a pulmonary specialist. Call me back.”
I found the chief striding down the hall. His preoccupied smile said Hello, I don’t have time for questions.
“So, when do you think she’ll get off the ventilator?” I managed to blurt out as I walked with him down the corridor. I wanted to grab his arm and yell, Talk to me. But I didn’t believe he really knew anything, and I was afraid of what I would hear if he did. I forced myself to smile.
He nodded, said something about watching Ariela’s progress, and walked away. What did it mean that he didn’t stay to talk to me? That they were giving up on her? Or that was she all right? I followed him, trying to remember what it was that I was supposed to ask next, but he was out of sight before I could formulate my question. Almost on cue, Janet the resident appeared, her eyebrows rose above the black frames. “Can I answer any questions for you?”
I tried to act polite. “Right, Janet. Just what are the plans for Ariela’s treatment? Shouldn’t we be thinking about bringing in a pulmonary specialist?”
“Oh no. We don’t need to bring in a pulmonologist. That’s what we take care of here.” She tried to smile. “We’re just waiting to see how she does, and then we’ll decide what to do next.” I visualized her rehearsing her lines in front of her bathroom mirror. Tonight, she’d go on a date and live happily ever after.
I called my brother. “Is Ariela going to make it?” I was afraid to ask this question, but he was the only person I could trust.
“You haven’t told me anything that would make me believe that she won’t,” he answered.
But what did I tell him? And what didn’t I know?
Twice a day, a portable X-ray machine decorated to look like a giraffe was rolled into Ariela’s room. The technician slid a hard metal plate under her body. Ariela squeezed her eyes shut at this. The movement shifted the endotrach tube in her throat, causing her to wince.
“You’re so brave, Ariela,” I whispered in her ear. She blinked “yes.” Of course, she knew this.
We waited for hours to hear the results of the X-rays. No improvement. Clouds filled the spaces where her lungs were supposed to be. We asked the group of white coats who convened outside Ariela’s room, “What are we doing to help her get better?” They said, “Antibiotics.” And, “Stay the course.”
Ariela’s rabbi came to see her. We stood in the hallway outside of her room. “Are you scared?” he asked.
“Scared? Why should I be scared?”
He nodded. He must have agreed with me. She would be fine.
Days passed. Ten days? Eleven? Each was the same. No change. At my brother’s prodding, I asked again for a treatment plan and a pulmonary specialist. Again we were told, this time by the attending physician, “This is what we do here in PICU.” My brother asked me if I knew anyone who could get the chief’s attention. I tried a pathologist who was married to an old friend. He told me to have faith. “Ariela is in the best hands at the best children’s hospital in the country.”
Then, I remembered my oncologist. She would know someone. I was still her patient. She said I was cured, but I continued to take medication to avoid a recurrence. My oncologist called the chief. The next day, a “Care Conference” was organized.
We met in a windowless room lined with chair beds. Parents slept here at night, and the room smelled like old socks. Ariela’s orthopedic surgeon, the chief, and the attending doctor from PICU; the nursing supervisor, two social workers, a respiratory therapist, and a pulmonary specialist — all sat around a large conference table. Ariela’s rabbi was not available so I invited the hospital’s Jewish chaplain.
At the beginning of the meeting, I placed a framed portrait of Ariela in the center of the table. “This is her Bat Mitzvah picture. Ariela is a very spiritual person,” I said. I wanted them to see Ariela without a tube stuck down her throat. I wanted them to know that she was not just a case.
A treatment plan was discussed: Respiratory therapy. Physical therapy. Continued ventilator support. We were told it would be at least two more weeks before Ariela could leave PICU. Gary and I were exhausted and said little. We heard more than one person at the table say, “Let’s wait and see.” At the end of the meeting, a pulmonary specialist was designated as the “point person” for Ariela’s care. We were not reassured.
Over the next two weeks, Gary and I saw little progress with Ariela and we were beginning to feel like permanent residents. I brought in a picture of her dog, a blanket from her bed, and a collection of her DVDs. I taped her get-well cards to the window. “Don’t get too settled in here,” Gary warned me. “We need to get her out of here.” He was right, of course, but I continued to bring in more of her things, hoping it would make her feel better, and because that’s what other parents did.
I watched the extended families who camped out around the second floor waiting for news. In the evening, the hallways filled with the smells of an international market. Cumin and curries and chilies all blended together as people cooked small feasts on the stove in the parents lounge and brought them out to the waiting room to eat with their relatives. The carpet was littered with hospital blankets, backpacks, and broken tortilla chips.
There were no beds for parents in PICU. If the nurses caught you sleeping in your child’s room, they asked you to leave. Parents could sleep on a La-Z-Boy chair in the parents lounge, or they could grab one of the couches in the waiting area and hallways.
Billy’s parents never left the hospital. They slept on two long couches in the corridor outside of PICU, their blankets and Coleman cooler at one end and Billy’s grandmother at the other end of a couch, knitting, knitting, knitting. She was saving their places on the couches. Billy’s parents had one of the best sleeping accommodations — an alcove where the overhead lights were turned off at night. They lay head to head, blankets pulled up covering their faces. No one really slept in PICU. From lack of sleep, Billy’s mother had two black eyes and a puffy face. She looked like she’d been in a fight.
When I could no longer keep myself awake, I headed for the chapel, a few yards down the hall. It was empty and dark, except for a small light shining over a shelf with a book propped on a stand. Anyone could leave a note in the book. I read the messages in English and cried for other people’s children.
Some people wrote the most eloquent prayers.
Thank you God for your abundant goodness and for the medicines to heal our Joey.
Dear God, we pray that your love guides the doctor’s hands during Allison’s surgery tomorrow.
So many words that said, Please, God, don’t let my kid die.
I assumed all the other people’s children had terrible diseases, not like my kid, who was there, because I had made a decision for her to have surgery.
Please Ariela, forgive me.
There were five chairs and a four-foot long cushioned bench in the chapel. I bent my knees and squeezed my body between the arms of the bench. During the night, my left leg started to cramp, and I resorted to sleeping on the floor. I slept with my cell phone. If the nurse didn’t call, I thought I could stay there for a few hours.
As I fell off to sleep, a little curly-headed blonde girl in a gingham pinafore came skipping into the chapel. She was the same little girl I had seen on the night Ariela was conceived. She giggled a sweet toddler sound. I wanted to ask her, What is so funny? But she skipped away before I could catch up with her. From the doorway, she looked back over her shoulder so I could see her face clearly. She looked so much like me.
In the middle of the night, the door opened and overhead lights shined in my face. “You can’t sleep here.” It was the security guard. “You have to clear out.” He left abruptly. I was too sleep-deprived to answer him. I couldn’t get up. My body was too heavy. I tried to pull myself up, but I was dizzy from exhaustion. Minutes passed before I could even open my eyes. I managed to get myself to a seated position, my legs extended in front of me. The guard returned and saw me sitting on the floor, head in my hands. “Do you need help?” This time, I detected some sympathy in his voice.
“No.” I shook my head slowly.
“Then you need to get up. What are you doing?” There was that sharp tone again. When had I heard it last? When my dad caught me and my high school boyfriend making out in our driveway?
I knew this was a good term. I’d heard the rabbi use it to mean silent prayer, and I was reflecting on where I would go, and where I would sleep. I picked myself up, grabbed my pillows, threw the blanket around my shoulders, and went to Ariela’s room. She was awake. I leaned over her and spoke into her ear, so she could hear me over the hum of the ventilator. “Guess what, Ariela? I got kicked out of the chapel. I don’t have anyplace to sleep. I’m a homeless person.”
Ariela found this tremendously funny. She smiled, her mouth curving up around the endotrach tube. She always laughed when I got into trouble.
Gary and I took turns, and it was my night to go home. I tuned into NPR on the drive, not really listening. Something about soldiers killed in Iraq. We should have been out by now.
I opened my front door, but Ariela’s dog didn’t run and jump up and soil my pants with his dirty paws. He didn’t bark his loud insistent “Pet me, pet me, pet me.” Instead, he limped toward the foyer, his head hanging, holding up his arthritic back leg. He’d been lying in his basket all day. He followed me, hobbling, to the doorway of Ariela’s room, his favorite napping spot, but he didn’t go in. He looked up without raising his head. Deep brown button eyes melted into his white fur. His “I must have done something wrong” face looked very much like his “I miss Ariela” face.
“Yes, Benji. She’s not here. She’s very sick.” I didn’t know what motivated me to get one of Ariela’s stuffed animals. Benji had been known to grab toys in his teeth, thrash his head wildly back and forth and growl, a display of primitive terrier. The stuffed white rabbit we normally put under Ariela’s left arm for support waited patiently between two stuffed dogs on her bed. I put the rabbit down on the floor near Benji’s front paws. He sniffed at the fluffy creature, carefully picked it up in his mouth, carried it to his basket, curled up around it, and went to sleep.
In her room the walls, with their rock star posters, beaded curtains, and silent music boxes, ached for Ariela. I stared at the photograph of the three of us on her bookshelf. Ariela must have been about four years old. She looked erect, but her spine was bent to her left and twisted back over itself. You couldn’t see Gary’s hand on her back keeping her from toppling over. Her entire weight, all thirty-eight pounds, rested on her left sit bone. I was holding her hands still for the picture.
It was after midnight but I couldn’t sleep. I wanted to crawl into bed with Ariela, lift her skinny, bent arms around my neck, and tell her, like I had so many times, “I think you should be the mommy today, and I’ll be the kid.” She would pat my back with her hand that is always in motion and giggle like that was the funniest thing she’d ever heard.
In the fourth or fifth week, my sister Lynn visited from Connecticut. I am the older sister, but she is the one who takes care of everybody — our family dog, our parents, now me. People automatically feel at ease with her. She’s that comforting. In the six days of her visit, Lynn met all the parents in PICU. She listened to everybody’s stories. She learned about the twelve-year-old who felt tired one day, needed a new heart, and got one. Just like that. She learned about the boy whose father, mother, sisters, and aunts all moved here from India so he could have open heart surgery. She learned about the nine-year-old with cerebral palsy who came in because she was dehydrated and the eight-year-old with a rare blood disease.
Billy’s dad told Lynn that Billy wasn’t doing well. The visor of his baseball cap hid his eyes. He shook his head and looked at the floor. A lot of people came to Billy’s room. Grandparents that looked just like Billy’s parents, but older, came to see him. Then a man came with a thin red shawl around his shoulders. He carried a black book with a gold cross. They put a sleep chair right outside of Billy’s room but no one used it. They stood around Billy’s crib with their arms folded across their chests.
Late one afternoon, as drawn curtains made the light unusually gray, a high-pitched sound pierced the hallway. “Is this some kind of fire alarm?” I asked my sister. She shrugged, pulled open the sliding glass doors, stepped out of Ariela’s room, and closed the door behind. She looked up and down the corridor, trying to locate some clue to identify the strange noise. The hallway was empty. Minutes went by and the long shrill note continued. It hung in the air and vibrated against the walls.
When Lynn re-opened the doors, the mournful cry hit my chest. I cupped my hands over Ariela’s ears. Lynn closed the doors and collapsed in the chair. “It’s Billy’s mom.” A red light flashed outside of Billy’s room, and then it stopped.
It was summer. Five weeks after Ariela was first admitted for her surgery. When I walked out of the hospital, I heard salsa music coming from the café. Ariela loved salsa. She loved big dance floors where her chair could swing around and bounce up and down to the beat. I wanted to take Ariela to the party. She loved a good party.
The night air was unusually warm for summer in Northern California. A short-sleeveless-cotton-dress night. A ride-in-a-convertible night. A balmy, breezeless night that took me back to Texas farmland and dirt roads out of town and just out of high school. Parked near an open field of dried grass and mesquite bushes. A night of stars and wet kisses. Full lips and sweaty hands. Hands everywhere. Futures as open as the Texas night sky.
I parked my van near the front door of the hospital. At night, I could sleep for a few hours in the car. One night, as I was dozing, a little boy appeared in the back seat. He was struggling with his tube. What are you doing in the dark, Tube Boy? The nurses gave him his nickname because he got tangled up in the long, opaque plastic tube that grew from his throat.
He had a room near Ariela. I could see him from the other side of the glass door, but he couldn’t see me. He had spent his entire life, two years — maybe more — on a ventilator. Arms, legs, and tube all waved in the air in one massive jumble of constant motion, sometimes slowly, like an elaborate tai chi exercise, sometimes more vigorously, like Jacob wrestling with God.
Tube Boy was in PICU for three or four days. No one came to visit him. Sometimes a nurse would sit him on her lap and play patty-cake and hand him toys. More often he was alone. He would grope for a plastic cube with cutout geometric shapes that a nurse had given him. He’d raise his eyes toward the overhead lights, reaching left, then right, sweeping the bed with his outstretched hand until he could poke his plump fingers into the holes and pull it closer.
When I came back to PICU one morning, Tube Boy was gone. “Where’s the little boy from the adjoining room?” I asked the nurse who was bringing in clean linens for Ariela’s bed.
“His mother came today and took him home. He’s fine. Just fine,” she smiled and turned her attention to tucking in the sheets.
How do you get home? Click your heels three times? How come Tube Boy’s mother, who is never here, gets to take her kid home?
By the end of the fifth week, Ariela was moved out of her single room to a room with three other patients. I didn’t like sharing. Gary tried to assure me that this was a sign that Ariela was moving in the right direction. “They put the sickest kids in the single rooms right outside of the nurses station,” he said. “Now, she’s in one of the rooms farthest away.” As far as I was concerned this was all relative. She was still sick. There was just someone else even sicker.
Every four hours, a respiratory therapist, an RT, visited Ariela and administered a treatment. The PICU doctors called it pulmonary toileting. “Her lungs are gunked up with snot that’s as thick and hard as cement.” Did they use the vernacular to help me understand what was wrong with Ariela? Was that supposed to be comforting?
The treatments tortured Ariela. She tolerated the medications that stung her nostrils and burned her lungs. She may have felt some relief from the percussive breathing, when an RT pounded on her back with a hollow soft plastic cup. Then they stuck a tube down the endotrach and suctioned out the stuff that clogged her lungs. It was that last step that made her shoulders hunch up and touch her ears, that made her eyes scream, “Help me.” Four, five, six times the suction catheter went down, scoured her insides, and came up with the thick substance that plugged her airways.
Ariela’s aides and a few friends gave us breaks from Ariela’s bedside, but Gary or I were always with her during the respiratory treatments. We stroked her cheek and touched her forehead. We played her favorite songs — John Mayer or Norah Jones — on her CD player to distract us all from the intense pain. We said, “Hang in there. It will be over soon.” And we wondered if she believed us. Mostly, we just stood at her bedside, opposite the RT, held her hand, and drowned in the wet lines that streamed down her cheeks.
Sometime during the fifth or sixth week, the RT ran late. At five minutes to seven, the nurse on duty, wearing a nervous smile, asked me to leave.
“I’m not leaving now,” I said.
The nurse looked up from her seat at the nurse’s table in Ariela’s room. “Well, you have to leave now, it’s seven o’clock.” No one except staff was allowed in PICU from 7 to 7:30, both a.m. and p.m., when the nursing shift changed. The nurses going off shift reported out to the nurses coming on. You could listen to information about your own child but not about anyone else’s child. Of course, when you went out in the hall, the parents told you everything you never wanted to know — diagnosis, treatments, entire medical and family histories.
“It’s seven,” the nurse repeated.
“I know what time it is.” I kept my voice even. “The RT is just starting to suction Ariela, and I can’t leave her now.”
I turned to look at Ariela, avoiding the nurse’s gaze. I heard the nurse take a deep breath. She left the room and came back with the break nurse. She was at least as young as the first nurse, but wore the self-assurance of someone who had been in PICU for a while. “You’ll have to leave now, Mom,” said the break nurse, in a cheery tone. All the mothers were called “mom” in PICU. That way no one had to remember your name. I usually responded with, “Just call me Harriet.” I refrained from saying, “I’m not your mom.”
“I’m not leaving now. Ariela’s being suctioned. This is when she needs me. I’ll leave when the RT is finished. Talk to the RT.” I remained rooted to the linoleum floor tiles, which was not difficult. They were sticky from the nutritional supplement that dripped to the floor when the nurses filled Ariela’s feeding pouch.
I really didn’t want a confrontation, but I wasn’t going anywhere. I held on tight to Ariela’s hand. The break nurse turned to the RT, who was fumbling with the tubing, not wanting to take part in the conflict. “Well, can you wait on this?” We all knew what the answer would be. He shook his head “No.”
Both nurses left and returned with the charge nurse. She was closer to my age and didn’t pretend to be sweet. With hands on her hips, she stood at the foot of Ariela’s bed. At five foot ten inches or so, she had about nine inches on me. For a moment, I imagined her lifting me up and carrying me out. “Mom, please step out into the hall. We have to comply with the HIPPAA regulations, and you can’t be in the room when we are talking about the other patients.”
I turned my head but not the rest of me. “Look. How can I possibly hear anything over the hum of the ventilator, the constant beeping from all the monitors, and the locomotive that’s running in Ariela’s chest? If it makes you feel any better, you can stick cotton in my ears. But I’m not leaving now. Ariela needs me.”
“We’re just trying to do our job here,” said Commander Charge Nurse.
“I appreciate that you’re trying to do your job. I’m just trying to do my job. This is what I’m here for.”
The three nurses huddled by the privacy curtain until the charge nurse turned to face me. “For this one time, the nurses have agreed to report out at the nurses station. In the future, we’ll arrange for the RT to start treatment at 5:30. So, we’ll allow you to stay in the room for now, if that’s what you want.”
No, that’s not what I want. I don’t want to be in this room. This dreary place with no sunlight, no fresh air, children coughing, crying, or not making any sounds at all. Ariela’s face was in shadows, but I could see the big pools by the corners of her eyes. I just wanted to pack her up and go home.
The surgeon came to check on Ariela’s wounds. “Has anyone mentioned removing the endotrach tube and putting in a tracheostomy?”
“No. No one’s mentioned a tracheostomy.” Actually, that was a lie. My brother had mentioned it. “In other hospitals, they would have done a tracheostomy in two weeks,” he said. “It’s not good to be on the endotrach tube for so long.”
But I didn’t want to go from one tube to another tube. I envisioned Christopher Reeve, heard his raspy voice, and found myself choking.
When are you taking her off the tube? — Gary began prodding the doctors with this daily mantra. In the early hours one morning, before the day shift came on, he found the door open to the second-floor radiology office. He slipped in and noticed Ariela’s morning chest X-rays on the monitor. Gary had once worked as a nuclear pharmacist. He understood imagining. He hunted down the fellow. “Her lungs look clear today,” he insisted. “Why not today?”
“Don’t get too pushy with them,” I warned him. “We want to be sure that she can stay off.”
“You want to get her outta here, don’t you?” Gary’s frustration spewed out and spilled all over me.
“Hey, don’t get mad at me.”
“Look, I can’t take it here any longer.”
“It’s not about you, Gary.”
I was nervous about taking her home. Gary would go back to work, and I would be left alone to take care of her. We argued over the phone. We were never together in the hospital. We gave each other a hurried kiss as one went home, and the other returned to stay with Ariela.
Gary persisted with the doctors. A date was set for the extubation. We were approaching week seven.
When the time came, Gary and I weren’t allowed in the room while they pulled out the tube. We were told the procedure might take up to an hour. It would be the first time we had been together since Ariela entered the hospital.
My neighbor, whose daughter had been hospitalized many times in this same place, stopped me in my car on my way to the hospital. “It’s a good time for a quickie,” she said. With her advice in my mind, I fantasized life on an episode of ER. But, where? Not the chapel. Maybe a closet.
Gary had other ideas. A voicemail told me where I’d find him: “I’m standing right outside PICU. As soon as the doctor walks through the swinging double doors I want him to see me.”
Later the night nurse came in and saw Ariela breathing on her own. She looked up at the ceiling and said, “Thank you, Jesus.” I thought she was joking. I don’t think I’d heard anyone outside of a movie or TV show say this. She leaned over to check Ariela’s pulse and IV. A large Celtic cross swung forward from her neck. “Thank you, Jesus,” she said, a second time. Then I knew she meant it. Was she the same nurse who had told Ariela’s aide that she didn’t think Ariela would make it? Thank you, nurse, for thanking Jesus.
The surgical fellow appeared to examine Ariela. “No more surgeries for her,” he said. “Too risky. Her lungs are damaged. She would never survive.”
Fine with me. I have no intention of letting her get anywhere near a hospital again.
Gary’s new mantra became, When are we taking her home?
On July 14, fifty-four days after we first came to the hospital, we did that. We packed up our van with oxygen tanks, a pulse oximeter to measure her oxygen level, a suction device to draw-out the phlegm from the back of her mouth, a pump for nasal-jejunum feeds, a cough-a-lator to help her cough, a BiPAP to force air into her lungs, a nebulizer machine to dispense the medicine for breathing treatments, at least six months’ supply of powdered formula, and Ariela.
“Do you think they’re sending her home because she’ll max out on our insurance in the next few days?” I asked Gary. He shrugged. “That’s our million dollar baby,” he said.
Ariela wore a new gauzy cotton skirt and blouse I had bought her to celebrate. A tube crawled out of her nose. It slid across her face, down her neck, into the blouse, and out by her side to a feeding pouch hanging on the back of her wheelchair. She looked straighter, taller, older. There was a long zipper of a scar down her entire back and another hugging her left side. She weighed thirty-five pounds.
“It’s Bastille Day,” I told the PICU attending physician. “A great day to break out of here.” At the hospital entrance, I tried to take Ariela’s picture to capture the occasion, but she was unwilling to smile.
The writer will forward donations via The Big Roundtable (see below) to the International Rett Syndrome Foundation (IRSF), in memory of her daughter, who died in 2014.