Here is a free sample of Proxy for your reading pleasure!
eva aimed her phone at Seth as he stood proudly in front of the roller coaster. There were smiles all around, children who were excited at being in the theme park, the dream of every kid in America.
But none were like Seth’s. None of the other kids had worked as hard as Seth had to get there. He had fought through his illness, through countless hospital stays, never wavering from his wish to visit Disneyland. His face was pale, his spiky dark-blond hair damp with sweat, and his lanky teenage body too thin, but he had made it there. He’d made it to his goal. And, as he had insisted, not in a wheelchair but under his own power, though she noticed that he was leaning against the signpost for support.
He was her brave boy. Strong in heart, if weak in body.
“I can’t believe we’re here,” Seth said, for about the hundredth time that day. But this time it wasn’t just ‘here’ in Disneyland, it was ‘here’ in front of the roller coaster he had always wanted to ride. Successfully raising the money to get to the park had been exciting. Entering the grounds had been thrilling. But standing in front of his roller coaster was the pinnacle of joy for Seth. “We’re finally here!”
“Yes,” Leva agreed. “Give me a big smile.”
He smiled and gave a thumbs-up. Leva took a couple of shots and then lowered her phone.
“Well, are you ready to actually go on it?” she asked. Roller coasters weren’t her thing, and Seth had never been on one. She was still waiting to see if he would go through with it.
Seth looked up and watched the roller coaster go through its loop-the-loop, passengers screaming wildly and waving their arms. He swallowed.
“I have to go on it,” he asserted.
“You don’t have to. It’s up to you. We don’t have to go on every ride, you know.”
“I know… but I have to go on the roller coaster.”
“Only if you want to.”
He nodded. His face was sweating and Leva wondered whether it were because he was scared, because of the heat, or because he was sick.
“Are you feeling all right, baby?”
“I’m not a baby,” Seth growled.
That, at least, was a normal response for when he was well. When he was sick, he didn’t argue about not being her baby. He wanted to be held and nurtured just like any helpless child.
“I’m fourteen,” Seth reminded her. “You can’t call me a baby.” His eyes shot around at passersby to make sure that no one had heard her.
“Sorry,” Leva apologized. “You’re right. I should be more careful when we’re out in public.”
He nodded. “Let’s get in line.”
Leva led him over to the disabled entrance. Seth opened his mouth to argue. He didn’t want to look different. He didn’t want people looking at him and wondering what was wrong with him that he had access to the disabled line. But when he looked over at the regular line-up and how far back it stretched, his lips pressed together, and he didn’t protest. Walking around the park and standing in line was exhausting. If he wanted to be able to continue to live the dream, he had to stick to the short lines.
Leva flashed her pass at the ride attendants to confirm that they were qualified to be in the disabled line. A pretty blond girl who didn’t seem like she could be much older than Seth leaned over and opened the gate for them, giving Seth a brilliant smile.
“Come right this way,” she offered. “We’ll put you on the next car that comes in.”
They watched another train rush through the curves of the roller coaster, screams washing over them. They could see the LCD screens displaying everyone’s photos as they went through the last curve. Open mouths, flying hair, shrieks of delight.
Seth leaned against the wall; one hand pressed to his stomach. The young woman who had let them in grabbed a wheelchair from a nearby corral.
“Here, sit down. Are you okay?”
Seth tried to wave off the wheelchair, then collapsed into it with a sigh. “Just tired.”
“Okay. You sit there until I have a space for you. Give me or Derek a shout if we can get you anything else. Okay?” Her voice was bright and encouraging. No pity here. It was the happiest place on earth. Everyone got the same smiles. Everyone was on equal footing, healthy kids and terminal alike.
Leva moved closer to Seth to rub his shoulders and analyze just how tired he was. She had hoped to be able to put in a little more time; but they had five days to see the park, they didn’t have to do everything in one day.
“Don’t,” Seth protested, slapping her hands away in irritation. His eyes went to the cute blond employee. Not too tired to care what she thought of him.
The next train pulled up and people disembarked in a babble of excited chatter off the opposite side. The girl opened up a cart for Seth and pushed his wheelchair up close to it. When she put the brakes on, Seth was able to get up under his own power and transfer to the seat. Leva climbed in beside him, though she was sure he would rather have had the girl there. Or any girl other than his mother. The employees moved up and down the cars, making sure that everyone was properly buckled and barred in. They were instructed to secure all phones and cameras. Leva pushed hers farther down into her pocket. She’d be devastated if she lost her phone. It would be smashed to bits if it fell from the top of the roller coaster when they went through the loop-the-loop. Everything was stored in the cloud, she supposed, but it would be a lot of work to restore it to another device. She needed to have everything at her fingertips.
“Are you sure you want to do this?” she asked Seth.
He was breathing heavily, almost hyperventilating. His skin was pale and sweaty.
“Are you okay?”
Seth nodded. “Gotta do this,” he muttered. He clenched his fingers around the restraining bar, knuckles turning white.
“If you want to do a different ride… you don’t have to go on the roller coaster.”
“I do,” Seth insisted. “I do have to go on it!” He swore. “Just leave me alone, Mom! I can do this. I’m not a baby.”
“I know you’re not. I’m just worried about you.”
“Well, quit it. I’m fine.”
“Okay.”
She tried not to look at him directly. He was obviously terrified of the roller coaster, but it had been his dream for so long. He had told so many people he was going on it. It would be the first question everyone asked. ‘Did you get to go on the roller coaster?’ He was locked into it now and didn’t see any way out.
Leva put her hand over Seth’s and gave it a little reassuring squeeze. Seth moved his hand away in irritation.
There were a number of announcements, a last warning, and then the cars started to move on the track. There was a collective gasp, a held breath in anticipation, and they were on their way. Seth suddenly wasn’t so irritated about having his mother next to him and put his hand over Leva’s, squeezing tight. She tried to give him a smile and quick words of comfort, but the words were torn from her mouth by a lurch of the cars, and they were racing down the track, in a vortex of sound that made it impossible to talk to each other. Leva did her best just to hold on and suppress her own physical reaction to the movement.
Roller coasters weren’t her thing.
It was in the loop-the-loop, the one thing that Seth had been anticipating half his life, that she felt him go limp beside her. Leva tried to turn her head to look at him, to shout out to him, but she couldn’t. She was pressed back in her seat by the force of the train going around the loops, and couldn’t move to help him.
By the time they got down to the bottom, to the end of the ride, Leva was screaming, yelling for help. Her yells drowned out the thrilled screams of the other passengers and everyone was suddenly looking at her, aware that something was wrong.
It wasn’t the pretty blond girl that met them at the exit, but a tall, acne-scarred boy with an overbite who didn’t look old enough to ride by himself, let alone be qualified to evaluate a medical emergency.
“Ma’am? Are you okay?”
Leva indicated her motionless son, his head lolling to the side.
“Did he faint? Some people experience syncope when they go through the loop,” he told her in a calm voice, reciting the words that had been drilled into him in training. “Does he have any medical conditions?”
“Yes, he has a medical condition!” Leva yelled at him. “That’s what I’m trying to tell you! Get an ambulance. He needs to go to the hospital!”
The boy hesitated, his eyes going to Seth and then to the other employees. “I can get some ice and a first aid worker. He’ll probably be fine in a couple of minutes.”
“It’s always the boys that faint,” a woman worker said with a laugh.
“Get—an—ambulance!” Leva insisted. “Do it now! Don’t stand there laughing at him!”
She fought loose of her restraints so that she could lean closer to Seth. She thrust her fingers into his pulse, her own heart hammering so hard and fast it hurt her chest. She was relieved to feel his pulse still beating. Her body slumped and she let out her breath.
“Is he… he’s not dead?” asked the boy with the acne. “He’s okay, right?”
“His heart is beating,” Leva said, “but it’s very weak. Will somebody please call an ambulance?”
“It’s on its way,” an older employee assured Leva, moving in and taking charge with her calm manner. “Darcy, we’re going to need to shut down the ride. See to it. We need to clear a path for the ambulance. First aid workers are here,” she observed, waving to the uniformed first-aiders.
“Passed out on the roller coaster?” the male first-aider asked with unconcern. “It happens all the time. Nothing to be worried about, ma’am. He’ll just be a little confused…”
He reached for Seth. Leva didn’t know if he planned to slap Seth’s cheeks or shake him awake, but she pushed him back angrily.
“This is a serious event!” she snapped. “He could die! Does it look to you like he just fainted?”
The man froze, looking at her in alarm. “What…?”
“Seth is a very sick boy! His heart is still beating, which is a good thing since I don’t see a portable AED here. Why wouldn’t you have an AED at a roller coaster?”
“We do, ma’am. But you said his heart is beating; he doesn’t need one…?”
“Where is it? Are you completely incompetent? All of you?”
Someone pushed forward, holding the AED case out in offering like the holy grail. “It’s here. Do you need it?”
“Not yet, but we might,” Leva snapped. “Help me get him out of the car. Lay him down. Elevate his feet.”
“Shouldn’t we leave him there?” a girl argued. “I thought you weren’t supposed to move anyone.”
“This isn’t an injury accident. He didn’t get hit by the roller coaster. Get him out. Lay him down. Get blankets for shock. Don’t you have blankets?”
By the time the ambulance got there—nearly fifteen minutes, Leva noted, looking at the time on her phone again—Seth was lying on the concrete, blankets over him even in the sweltering weather, feet elevated, the AED open beside him. The paramedics looked over the scene.
“What happened? What’s going on?”
“He has mitochondrial disease,” Leva said. “He passed out on the roller coaster. He might have had a heart attack! We’ve treated for shock.”
“The AED hasn’t been used?” the paramedic asked.
Everyone shook their heads, looking at each other for approval.
“If you thought he had a heart attack, shouldn’t you have hooked up the sensors?”
Leva looked at the open AED box. She had prepared everything in the event that they needed it, monitoring Seth’s pulse manually. But the AED would have monitored what kind of rhythm it was. Whether his heart was producing the right electrical impulses, not just beating.
“Doesn’t anyone know how to use this thing?” she accused. “Hasn’t anyone been trained in what to do?”
The paramedic moved in with his stethoscope, pulling the blankets aside and pressing it to the outside of Seth’s t-shirt. He motioned for silence, and the chatter among the employees subsided. Leva held her breath, waiting for his verdict.
“It sounds okay,” he said. “We’ll hook him up to a monitor when we get him into the ambulance. You’re his mother?”
“Yes.”
“What can you tell me about his medical condition?”
“Haven’t you ever heard of mitochondrial disease?” she challenged.
“I’ve heard of it. Not in relationship to having a heart attack or fainting riding a roller coaster. Does he have heart problems?”
“Yes, he has a damaged heart from incompetent treatment in the past.”
“Should he have been riding a roller coaster with a damaged heart?”
“The doctors cleared him. They said it would be okay.”
The paramedic and his partner checked all of Seth’s vital signs. “He seems stable. Has he fainted before? Is he prone to seizures?”
“Yes, he’s fainted. But if it was just a faint, he’d be awake by now. This is far more serious.”
“Has he had seizures?”
“Yes. But this doesn’t look like a seizure.”
“A seizure doesn’t have to look like a tonic-clonic seizure. It can be difficult to detect without proper equipment.”
“We need to get him to the hospital,” Leva insisted, panic rising.
“Let’s do that,” the paramedic agreed. He and his partner got the gurney out of the ambulance. They seemed to be moving in slow motion. Leva didn’t understand why paramedics and doctors always seemed to move so slowly. On TV, it was always a rush, everybody dove in and did their part, shouting out orders, doing something to make sure that they could save the patient. In Leva’s experience, it was never like that. The doctors took hours, sometimes days, to evaluate an adverse event and decide on a course of treatment. Half the time, she was the one who suggested a diagnosis and course of treatment before they could come up with something.
They got Seth onto the gurney and into the ambulance.
“Can I ride with you?” Leva asked, climbing up.
“I’m sorry, ma’am. Policy says that we can’t take any passengers. You can meet us at the hospital.” He told her which one and asked if she knew her way there.
Leva shook her head. “We’re not from here. We came on a vacation. Something special, to celebrate that Seth was doing better. We raised the money to get here with an online fundraiser. We just got here today.”
“Okay. Why don’t we see if we can get a police officer to escort you over there? Do you want to get your car?”
Leva shook her head. “It’s all the way over in the parking lot on the other side of the park. And I’d have to pay for parking at the hospital. It’s always such exorbitant prices. Can I leave it here?” Leva asked one of the park employees. “Is it going to get ticketed and towed away if I don’t pick it up today?”
“If you’ll give me a description and the plate number, I’ll take care of it.”
Leva had to get out her wallet and check her registration to give him all the details. Her brain wouldn’t work. She couldn’t even remember the make. The man noted down all the appropriate details.
“Don’t you worry about it. It will be there tomorrow. And if you need a ride back here to pick it up, you call this number,” he gave her a hospitality card. “A service will pick you up and bring you back here. No charge. I’ll tell them to expect your call.”
Leva nodded. The paramedic who was going to drive closed the rear doors of the ambulance. “We’re going to go on ahead, ma’am. Police will be here in two minutes. We’ll meet you in Emergency.”
“Okay. Thank you.”
In a couple more minutes, the ambulance pulled away, lights flashing but siren off, moving out through the park at a sedate speed.
Leva took a picture of Seth in the hospital bed, IV in his arm again, oxygen threaded into his nose. He had machines monitoring both his brain waves and the electrical activity in his heart. He had not woken up. They were running blood tests and had scheduled brain imaging to see if they could figure out what was going on.
She used an editing app to lay the pre-roller coaster picture and the hospital picture side by side, tapped in a status update, and uploaded them to all her social networking sites with one click. Before long, everybody would know as much as she knew. Family and friends would send their encouragement.
Maybe somebody would have additional suggestions of things that the doctors should check for. Theodore Woodward’s aphorism always made her shake her head: “When you hear hoofbeats, think of horses, not zebras.” Seth had always been her little zebra. Diagnosing him was always just beyond the doctors’ reach. A cold or flu virus would land him in the hospital for weeks. His electrolytes went up and down like a yo-yo, completely unpredictable. One day he would seem fine. Strong, acting like a normal teenager, and then the next, at death’s door.
Getting a diagnosis of mitochondrial disease had felt like such a victory. Finally, an explanation for everything. But instead of being the end of their journey, it had been another starting point.
So little was understood about how the mitochondria worked, how cellular energy was created and how one little failure of an enzyme or something else in the process could disrupt the entire body. And what course of treatment were they supposed to follow? There were research programs, experimental protocols, the herb and naturopathic route. The optimum diet. Vitamins and how they affected the whole Krebs cycle and might—or might not—fix everything. Diagnosis had brought more questions than answers.
“Mrs. Wilcox?”
Leva looked up at the doctor who hovered over her. She’d been staring down at her phone, willing it to ring. Praying for someone who had a suggestion to call, text, or message her and let her know. She’d completely blocked out everything else. There was a dark cast to his skin. Black hair and dark brown eyes. A young man. Old enough to be a fully-fledged doctor, but not old enough to have his university loans paid off.
“Doctor! I’m sorry, I was somewhere else.”
“Understandable. I realize how difficult this has to be for you.”
“Oh, I don’t think you do,” Leva said, shaking her head. “By my count, this is Seth’s forty-eighth hospitalization.”
His eyes widened at this announcement. “Well, that would explain why my staff says they are having trouble getting me a comprehensive medical history.”
He sat on the edge of Seth’s bed to talk to her. Leva bit her tongue to keep from telling him how unprofessional that was. At least he had come to talk to her directly, rather than hiding behind a cadre of nurses and interns. He was trying to have a discussion with the one person who could help him, the one person who knew Seth’s history like some people knew ancient Roman history or the entire genealogy of the British monarchy. Seth was Leva’s obsession. She was the expert on Seth and everything that had happened since he was born.
“He’s been diagnosed with mitochondrial disease,” Doctor Darvish said. Leva tried to fix his name in her memory so that she would be able to record it and to ask for him again later. Later when he wasn’t on duty, and the nurses didn’t want to deal with Leva’s questions or didn’t want to pass on her thoughts and her latest research to him.
“Yes, that’s right. Umm… two years ago now. We thought that once he was diagnosed, it would be easy to find the right course of treatment and get him healthy again. But that hasn’t been the case.”
He nodded sympathetically. “It is new country for us. Being able to diagnose it is a step in the right direction, but finding the appropriate treatment can be elusive.”
“So what can you tell me about what happened today?” Leva asked. “He just collapsed. If it had just been a faint, he’d be awake by now. It wasn’t heart or a seizure… so what is it?”
“Has this ever happened before?”
“Sometimes if his electrolytes are off. I told the emergency room to test.”
“His sodium levels are extremely high. Can you think of any reason that would be?”
“They can be all over the place. He didn’t have anything salty at lunch; I don’t think. I mean, some junk food, because it was Disneyland, but nothing that should have pushed his electrolytes out of whack. Unless there’s a problem with his kidneys…”
“I notice he has a feeding tube.”
“He’s been through so many crises when he hasn’t been able to eat… I prefer the feeding tube over a central line.”
“It’s unusual to leave it in once the crisis is over.”
“Yes. But taking it out and putting it back in multiple times is worse, it increases the chance of infection.”
“He’s really too old for a feeding tube.”
“What does age have to do with it?” Leva demanded. “If he is in a coma like this, how do you propose to give him his nourishment? You know that IV solutions are not sufficient. He has mitochondrial disease; we can’t afford to let his cells starve, even for a day.”
Darvish’s lips pressed together. He didn’t agree or disagree. He wrote something down on Seth’s chart.
“We’re giving him D5W,” he said, indicating the IV bag. “But I’m recommending dialysis as well. We don’t usually recommend dialysis for high sodium, but cases as acute as this are very dangerous. Outcomes are not good if we don’t get control of it.”
Leva nodded. She swiped on her phone and entered this new protocol in her health care app.
“But you don’t have any idea what might have caused this in the first place?” she asked.
“I’m afraid not. Kids with metabolic disorders can be… challenging to deal with. He hasn’t had any fever or diarrhea? No confusion before the ride on the roller coaster?”
“No, he seemed fine. He was anxious about it. Tired. Sweating from the heat. I suppose he might have gotten dehydrated from all the walking around and sweating.”
“That could have contributed, but I would have expected something more than that.”
“And you don’t think it was the roller coaster itself? We checked with all the doctors before we went, and they said it was safe.”
“I can’t think of anything the roller coaster should have caused other than queasiness or fainting. He didn’t throw up? On the roller coaster or earlier in the day?”
“No. Not today. I wish I could point to something that simple.”
He nodded and got up from the bed.
“We’ll treat him, and try to avoid messing up any other electrolytes in the process. Someone will be coming to take him down to dialysis. The next time you see him, he should be awake.”
“Can’t I go down to dialysis with him?”
“Sorry, no. Not this time. We’ve got a flu outbreak, and the unit is under quarantine. No one is allowed in.”
“Oh.” Leva nodded. “Okay. I guess when he goes down, I’ll pop over to the cafeteria and get something to eat.”
He nodded and reached out his hand to shake hers.
“Good to meet you, Mrs. Wilcox. Don’t you worry; we’ll get him fixed up as quickly as we can.”
ow is Wilcox doing?” Jahn Darvish asked the nurse over the dialysis unit.
“His levels are normalizing. What the heck happened to throw his numbers off so far?”
“Still investigating that. Is he awake?”
“Not last I saw, but he should be awake before long. You can see if you can rouse him.”
Darvish nodded his thanks and went down the row of dialysis beds, smiling at the patients as he went by. He found young Seth Wilcox’s bed and shook the boy’s arm.
“Seth. Time to wake up now, Seth…”
Seth’s head moved slightly, but he didn’t open his eyes. Darvish squeezed tighter and shook harder.
“Come on, Seth. Time to wake up. I know you’re tired, but I need you to talk to me.”
The muscle in Seth’s arm tightened, resisting. Dr. Darvish moved to Seth’s face, patting him on the cheek, each pat making Seth flinch and squeeze his eyelids closed more tightly.
“Wake up, Seth. Open your eyes now. If you talk to me, I’ll let you alone, and you can go back to sleep.”
“No,” Seth groaned.
“Come on, son. Let’s see those baby blues.”
Seth’s eyes blinked reluctantly open. Darvish gave him a reassuring smile and waited for a few moments for Seth to focus on him and get oriented.
“What happened?” Seth whispered.
“You had a little problem with your electrolytes. What do you remember?”
Seth brought his hand up to his face and rubbed his forehead with a frown. “I don’t know. Wasn’t I at Disney?”
“Yes, you were. What were you doing there?”
“My mom raised money for me to go. ’Cause that’s what I’ve always wanted. Am I still there? Or am I home?”
“You’re still in California. What was the last thing you did at Disneyland?”
Seth cleared his throat, looking around. He rubbed at the oxygen tube feeding into his nose. Not like it was bothering him, or he wanted to pull it out, just feeling with curious fingers to see what was going on.
“We had lunch. Took a break. We were going to go on the roller coaster.”
“And did you?”
Seth thought about it, his eyes vague. His brain seemed to be moving very slowly. Whether that was normal or a result of Seth’s screwed-up ’lytes, Darvish wasn’t sure. He needed to get his hands on as much of Seth’s medical history as he could.
“I don’t think so,” Seth said finally. He turned his head away from Darvish, letting it loll in the opposite direction to get another view of the room. He stared at the dialysis machine. “Why am I on dialysis?”
“There were dangerously high levels of sodium in your blood. I wanted to clean it as quickly as possible to avoid damage to your kidneys. Have you been on dialysis before?”
“Yeah.”
Darvish made a note of this on his phone. Not on the official record, but a reminder to himself to follow up on it later.
“What did you have for lunch, Seth?”
Seth continued to stare at the dialysis machine as if mesmerized.
“I don’t remember.”
“Did your mom buy something? Or did she bring something with her?”
“I don’t know. Maybe… I don’t know.”
“Tell me about your feeding tube.”
Seth fingered it under his hospital robe, looking irritated. “I hate it. It gets in the way all the time. People think I’m like a freak. Who wants to be around a guy with a tube coming out of his belly? It’s gross.”
“I can see how it might put a crimp on relationships,” Darvish agreed, giving a nod. “So why do you still have it? You don’t need it, do you?”
“No,” Seth plucked at it. “I don’t need it and I don’t want it. You could tell my mom to get rid of it.”
“It’s your mom’s idea?”
“She says I need it when I can’t eat.”
“That sounds reasonable, doesn’t it?”
Seth scowled. He slumped back against his pillow and hit the arm of the bed with his unencumbered hand.
“Did your mom put something in your tube?” Darvish asked. “Maybe she put something down it that she shouldn’t have. Something that made you sick.”
Seth stared at him without expression.
“Did your mom put something in your feeding tube today?”
Seth shook his head. “I don’t remember. She didn’t need to. Not when I was feeling okay.”
“Has your mom ever put something in your feeding tube that she shouldn’t have? Something the doctors didn’t know about or approve?”
“She wouldn’t do that.”
“Maybe an herbal remedy or dietary aid that she read about online. Vitamins or digestive enzymes.”
“The doctor has to approve everything.”
Darvish nodded. “Okay. Well, you’re going to be here for a while longer, so if you want to go back to sleep, you can.”
Seth appeared to be more wide awake now, and not inclined to go right back to sleep. He shifted his position.
“Can you sit me up?”
“Sure.” Darvish worked the controls to bring Seth up to a sitting position. “How’s that?”
“Can I go back today? To Disneyland?”
Darvish couldn’t help but laugh at Seth’s eagerness. “Sounds like you’re already feeling better. I don’t think you’re going to get back there today. We’ll talk about it tomorrow. Though I’m not sure the roller coaster is a good idea.”
“I only have five days. I have to do everything in five days.”
“We’ll see how you’re doing, Seth. We don’t want to release you and have you collapse again. It could be even more serious next time.”
“I feel fine.”
“That’s good. I’m glad you’re feeling better. But we’ll have to watch your levels and make sure that everything is stable. I don’t like an episode like this just coming out of nowhere. I’d like to know what caused it.”
Seth shook his head. “But I don’t know. I just… things like that happen to me. Because of my mito. No one can control it.”
I hope you enjoyed this sample of
Proxy
By P.D. Workman
