Up and Running; The Inspiring True Story of a Boy's Struggle to Survive and Triumph

Excerpted from
Up and Running; The Inspiring True Story of a Boy's Struggle to Survive and Triumph
By Mark Patinkin

The previous day, the ER had received another meningococcemia patient. It was a young girl who, like Andrew, came in with petechiae. In her case, it did not turn into purpura welts. Clearly, Andrew was progressing faster. In terms of speed, Andrew was toward the top of Linakis's experience.

The worst damage of meningococcemia, Linakis knew, was caused by the reaction it triggers. Once the bacteria's toxins multiply in the blood, they ignite a destructive immunological flare-up that causes vessels to leak, organs to fail, and clotted tissues to die. In essence, at the vascular level, meningococcus drives the body into its own suicide. Some say it's akin to a match being dropped into a gasoline tank, and in fact, many who survive the first days of bacterial meningitis end up covered with the equivalent of secondand third-degree burns.

Over the speaker, Rebecca heard more people paged-"Trauma team and respiratory therapy to Trauma Room One, stat." At first Rebecca listened as if it were hospital white noise, and then it struck her: "That's us."

Mary St. Jacques was the assigned trauma nurse. She found the job stressful, and went to Florida three or four times a year to sit in the sun and decompress. The most trying part was the way children couldn't tell you what was happening with them. That also made the job challenging to her. Of her twenty-three years as a nurse, Mary had spent her last decade or so in pediatric emergency. The witching hour there tended to be around 11 A.M. As Mary put it, that's when all heck breaks loose. She noticed it was around that time when Ted Kaiser paged her. Inside, there was a boy on a gurney.

"He has the rash," Ted said. Mary understood Ted's shorthand. During the previous year, they had seen their share of it. The rash alarmed her. It was spreading; the child was going septic before her eyes.

"Andrew," she said, "my name's Mary. I'm one of the nurses. I'm going to take care of you."

The temperature in the trauma room was over eighty degrees, kept that way because patients there were often in shock. The room's cabinets were filled with such things as vascular cut-down kits for the opening of the chest, a kit for delivering babies, and a neuro kit capable of boring a hole through the skull to relieve cranial pressure. A respiratory cart had endotracheal tubes for intubation.

There were resuscitative drugs and a "code cart" equipped with epinephrine and atropine to restart a stopped heart. Behind Andrew's gurney, there was a suction canister, for either the removal of excess blood or the decompression of the stomach. There were two defibrillators, the second a backup in case the first malfunctioned. The staff was required to retest both during each shift and restock whatever else had been used. They understood there would be little time for that when the next patient came in.

Dr. Jim Linakis did not encourage a lot of shouting when he was attending a trauma. He preferred one leader in the room. That way, nurses knew who was giving instructions and could hear clearly. When treating Andrew, he didn't have to say much. The staff moved quickly, having done this more than once in the past year.

Mary told Andrew she was going to put him on the monitor. "It doesn't hurt," she said. "I'm going to give your arm a hug with a balloon to take your blood pressure." He did not resist. His arm remained limp. Someone put stickers on Andrew's chest. The Spacelabs monitor began to display cardiac and respiratory rates. They put a Pulseox clip on his finger that shined an infrared beam through the capillary beds, gauging blood-oxygen saturation. Beneath his chin, they attached a mask that sent up a mist of oxygen through sterile water.

Mary prepared an intravenous line. With a child as sick as Andrew you needed several two-way ports; in for medications, out for bloodwork. She used a yellow rubber tube for a tourniquet on his arm, then probed for a good vein inside his elbow. Once in, she announced she had a line, right "antecube," twenty-two gauge. Ted Kaiser worked to start an additional line, inserting a large-bore needle. He was aware of the parents as he did this. People were ambivalent about their kids being stuck. He threaded an IV catheter tube through the needle and anchored it. From those lines they would first draw blood, then infuse Andrew with antibiotics and fluids.

Scott Bateson saw one needle put into his son's wrist, another into his ankle; Andrew did not flinch or cry. The parents had to stay out of everyone's way since the staff was moving urgently. So far, only minutes had gone by since Andrew was brought into trauma.

Ted Kaiser tried not to dwell on how improbable it was that a child with so advanced a case of meningococcemia would survive. It was like in baseball: If you thought about throwing balls, you'd throw balls. Better to think about strikes. Briefly, he tried such a focus, but there really wasn't much time to get into that.

A nurse asked what kind of bloods Linakis wanted. "Let's get a CBC with diff, sed rate, blood culture, set of electrolytes, co-ags, DIC screen," he said. He asked for a clot sent to the blood bank so they could match Andrew's type. He asked for PT, PTT, and fibrin splits, indirect ways of confirming meningococcemia. A lumbar puncture would have given Linakis a more precise determination: You tapped the spine for cerebrospinal fluid and tested it for signs of infection. They began to talk about it. Someone asked if they should do it down here in the ER or wait until he got up to intensive care.

Linakis decided Andrew wasn't stable enough to turn him on his side, bunch him into a ball, and push a needle near his cord. Besides, Linakis didn't need a test to tell him how to proceed. He knew what he was looking at. The question wasn't what was going on with the patient, it was whether they could stop it.

Linakis pictured what was happening inside Andrew's body. Upon sensing the spread of bacteria, Andrew's immune system would have sent in white blood cells. Those cells would release packages of protective enzymes that would degranulate and cover the invaders. Meningococcus, however, had triggered Andrew's immune system to overreact, sending an irrational number of white cells into the fight, perhaps 10,000 against each invader when a few would have done. Andrew's body had released swarms of other immune agents as well, including cytokines and other proteins. It had flooded his body with interleukins and platelets. At such illogical volume, these protectors became toxic to the very host they were supposed to guard. The effect, internally, was akin to aiming a blowtorch at a mosquito upon the neck.

"Let's draw up a hundred per kilo of ceftriaxone," Linakis said. "We could go ahead and push that as soon as it's ready." Ceftriaxone was the strongest antibiotic they had. They gave Andrew the maximum amount. They pushed it through several intravenous lines at once.

"Is the antibiotic in yet?"

"Yes, most of it."

Linakis knew ceftriaxone worked quickly. Soon the bacteria in Andrew would begin to die. One thing doctors knew how to do was kill meningococcus; it isn't a robust organism. Still, it by now had begun its damage, releasing millions of endotoxins into Andrew's blood. As each meningococcal bacterium fell apart due to the antibiotic, it released still more poisonous molecules, accelerating the inflammatory cascade that was causing Andrew's body to turn on itself.

It seemed wherever Rebecca stood, a nurse bumped into her. Every so often, they would give words of encouragement.

"Think positive," one said. "A girl came in yesterday and is doing better today."

The assurance startled Rebecca. She thought: Why wouldn't you recover from this?

The medical people kept asking Andrew how he was doing. He would murmur, "All right." But he seemed far away.

Linakis continued to picture Andrew's physiological breakdown. When the body first sensed unwanted bacteria, the normal reaction was for vessels to dilate, allowing antibodies to come inside and attack the invader cells. Meningococcus, however, by triggering too many antibodies, caused Andrew's vessels to overdilate, becoming dangerously porous. Plasma was now leaking from his veins and arteries at a speed causing him to bleed internally. Andrew's blood pressure continued to decline. As it did, his ability to carry oxygen to his organs and tissues became more and more compromised.

"Let's give him some fluid," Linakis said. He asked for twenty cubic centimeters per kilo of normal saline. Ted Kaiser grabbed a one-liter bag kept in a heater at body temperature. He hung it on an IV pole. They routed the saline through an additional warmer before it entered Andrew's body.

It was common enough for Linakis to see shock in an emergency room. Usually it was the result of dehydration or blood loss, perhaps from a car accident. Put simply, a patient's tank got low. You wouldn't use a powerful medication like dopamine for that; you just needed to refill the tank by replacing volume. Once doctors infused a bag of fluid or blood, it usually did the job. The shock caused by meningococcemia was different. It was called septic shock, and made blood vessels so leaky that almost as quickly as doctors poured volume in, it seeped out again. Nurse Mary St. Jacques knew children could hold blood pressure and heart rate longer than adults, having a mechanism to compensate for shock. On the other hand, once children's pressure began to drop hard, they were more prone to crash.

As Andrew slipped deeper into shock, his body pulled its diminished blood supply to his heart and brain. In so doing, it shut down flow to the extremities. The skin there took on an increasingly gray cast.

Dr. Linakis felt Andrew's legs. Although the room was over eighty degrees and Andrew's temperature 102, his legs were cold to the touch. Linakis pressed Andrew's thumbnail until it turned white. Normally, it would quickly pink up again. Now it took four or five seconds to do so. It was the same when they pressed elsewhere on his skin, particularly the legs.

"His perfusion stinks," Linakis said. He guessed it was more than just circulatory collapse. The heart, hampered by the inflammatory reaction, was not working efficiently. That was predictable. Judging by Andrew's mental state, Linakis figured his brain wasn't well oxygenated either. The body was also pulling blood from organs that used a lot of it, such as the kidneys, putting those in jeopardy as well.

Linakis asked for an additional twenty cc's per kilo of normal saline. It was likely that those fluids would leak from Andrew's vessels too. So far, Linakis had given Andrew about a half liter, equivalent to one-quarter of his total blood volume, and he doubted it would be enough. He would have to pour in more, which could lead to other problems. Because kidney failure was all but certain, Andrew's body would be unable to expel the excess fluid. It would stay in him, filling the spaces between his organs and under his skin. He would begin to bloat, the swelling making it hard for him to breathe. In the worst case, fluid would start seeping into Andrew's lungs.

"What do you think about starting dopamine?" Linakis asked those around him.

At the right dose, dopamine might tighten Andrew's vessels, slowing leakage and boosting blood pressure. Just as important, it would make his heart beat harder, squeezing blood to places that could use some, like his kidneys.

But dopamine was serious medication. You did not want to administer it to a child unless necessary. "His BP's pretty stable," someone answered. "Why do you want to start it?"

Linakis wondered if yesterday's meningococcemia case fed into the hesitancy. That girl had never progressed to a crisis. Mightn't Andrew stabilize too? Then Linakis considered how different the two were. Already Andrew was sicker than the young girl ever got. "Do you believe we had two of these in a row?" someone said.

"Hopefully," said Linakis, "this one will do as well as the munchkin yesterday, but that's not what he's showing us right now."

Linakis checked the monitor for Andrew's last several blood pressures. He disagreed that they were stable. They were erratic, and going in the wrong direction.

"I'm concerned he's going to crash and burn," Linakis said. He instructed a nurse to start administering dopamine. He saw the rash continue to spread. He almost said "God, what's going on here?" but he was mindful of the parents.

Linakis found it startling to see a meningococcemia patient go septic after having come into the hospital so early. Staffers began calling out Andrew's rates. His blood pressure had been boosted back to 109 over 64 by the dopamine but was falling again. His oxygen levels were falling too, toward 80 percent. Normal saturation- sats-was 100 percent, or close to it. Anything below the high 80s was problematic. Andrew's body wasn't getting much oxygen.

Someone said, "Purpura is getting progressively worse." The spots on Andrew's abdomen and legs were turning into welts. Same with his arms. Linakis considered the progression scary.

"We have any blood results back?"

No. It had been only minutes since a certified nursing assistant had taken them to the lab. To Linakis it seemed much longer.

Jim Linakis thought he should talk to the Batesons. They did not yet know how grave their child's condition was.

"May I speak to you?"

Rebecca wanted to stay with Andrew. Scott followed the doctor to a nearby family room. "I just want to let you know what I think is going on in Andrew," Linakis said. "Of course, to be certain about this, we have to get cultures back from the blood test. But what I'm pretty sure Andrew has is meningococcemia."

Scott's head went right to meningitis. He had seen newspaper stories and remembered it as a serious sickness. Linakis wanted to be reassuring, but had learned that when parents are encouraged and things then go badly, it's more devastating.

"This disease is very dangerous," Linakis told Scott. "I can't be really sure. I can't guarantee you that Andrew will survive."

Scott asked how that was possible.

"Meningococcemia," Linakis said, "is very rapid." He told Scott that by now they had probably destroyed the bacteria that had caused Andrew to fall ill. But all the toxins, the by-products of the bacteria, were still in his body. That was causing the damage.

Scott didn't understand this. If the disease itself had been killed, why would Andrew be in danger of not surviving?

"What Andrew is going through from this point on," Linakis said, "is his body now has to fight off all these toxins." How that would unfold, he told Scott, was uncertain.

"Time is what saves the person," Linakis added. "It's the whole thing, getting the patient to the hospital quickly. And you did," he told Scott. Then Linakis said he needed to get back with Andrew.

Scott returned to the trauma room. He told Rebecca that Andrew had a bad form of meningitis. He could die from it. Scott broke down a little, and so did she, but only briefly, because Andrew was conscious enough to be aware of their reactions. Scott asked Andrew how he was doing. He felt if he could just get his son to stay awake and respond, things would be okay.

Andrew would murmur "All right," but only barely.

Rebecca asked a nurse if her son was going to die.

"Think positively," the nurse said. Others repeated similar words. When Rebecca looked at their eyes, she did not see optimism.

One of Rebecca's sisters, Deb Powers, worked in nuclear medicine at a nearby hospital. They knew she would be getting ready for the family's July Fourth gathering. Scott dialed her number on his cell phone.

"Deb," Scott said. "Could you please come to Hasbro? Andrew's really sick. I don't know what's going on, but he may not survive. They said it's meningitis."

Even as plasma continued to leak inside Andrew, Linakis knew another part of his system was causing perhaps greater problems. His clotting mechanisms were out of control. When a normal immune system senses a nick or tear in a blood vessel, it sends platelets to clot it off. Andrew's system had overreacted, perceiving every part of his leaking vessels as nicks in need of repair. In response, his body had released an unhealthy flood of platelets. They formed tiny clots, which began to flow like a black snowstorm through his vessels. Some of the clots snagged here and there. Most flowed until they reached the endpoint capillaries, which fed oxygen to the tissues. There, like flecks of tar, the clots began to choke entire capillary beds, cutting off patches of his body. That was what had first caused the petechiae and then the purpura. By now Andrew had so many such welts his skin resembled a ruined landscape.

Linakis did not know how deep the purpura damage would go. In severe cases of patients who survived it reached to bone, and skin grafts were required. Some spots, Ted Kaiser noticed, were appearing on Andrew's face. Dr. Linakis kept feeling Andrew's legs and hands. They were getting colder. That told him clots were obstructing the vessels to his limbs. In addition, Andrew's body was pulling his blood to his core organs. Andrew's feet and hands, being endpoints, were the first to be cut off. If this process was not reversed, Linakis knew, the extremities could die.

Mary St. Jacques noticed Rebecca's sister, Deb Powers, outside the trauma-room doors. The two happened to be friends. Mary stepped away to talk to her. She saw no point in trying to hide what was happening around another hospital person.

"Deb, he's real sick. We're worried about him." Deb Powers understood what that was code for. The faces of the staffers gave the same message whenever the doors opened.

The monitors told Linakis that Andrew's air exchange was adequate, enough oxygen in and carbon dioxide out, but he questioned how long it would remain so. Linakis thought Andrew's body needed more help. Could they lighten the load by breathing for him? Sooner or later, Linakis guessed, Andrew would have to be tubed.

"Do you think we'll do him any favor by intubating him?" he asked.

"Well," someone answered, "he seems to be protecting his airway pretty well right now."

Linakis nodded. "Why don't we get him up to the unit and see how he does there."

The function of the emergency room was to stabilize patients for intensive care. Linakis thought this work was close to finished. The antibiotics were in, and they had decided against a ventilator. A bit less than an hour had gone by since Andrew arrived.

"Is the unit ready to take him?"

"Yes," Mary St. Jacques said.

Linakis told everyone, "Let's get him going."

It took a bit of doing to transfer all of Andrew's support equipment to the gurney. They put his wires into a portable monitor and set it next to him. They put the oxygen underneath, and hung IV pumps on attached poles. A nurse and technician began pushing the gurney while Dr. Linakis walked alongside. Because of the sensitivity of Andrew's state, they moved slowly. Even small jostling could impact him. It made Linakis anxious. If Andrew went downhill, you could only do so much for him in transit. Andrew didn't move or cry.

Deb Powers walked with them. The children's nickname for Deb was "Aunt Love." She called her nieces and nephews that word-"C'mon, love"-and it caught on. Andrew used it now. "Aunt Love," he said, "can you make me better?"

"Pal, I'll do my best."

Mary St. Jacques wheeled Andrew to the back elevators. Outside a nearby window there was a sculpture of porpoises leaping from a flat roof. Mary took out her override key and inserted it, instructing the elevator to come directly.

Scott looked down at his son. It was hard to grasp how the spots could have gotten so much bigger. The elevator doors closed. Scott looked at the wall. It was covered with reflective metal bumps that were somewhat hypnotizing. His gaze stayed there and he was lost in his thoughts.

No one talked while they rode up. It had often been Ted Kaiser's experience that this was where you could hear parents pray, even if they were doing it silently.

The trip from the ER to the ICU was five minutes, and in that time Andrew's rash grew further. Linakis had never seen that before. He thought to himself, God, he's got a lot of purpura. Andrew arrived at the pediatric intensive care unit around 12:15 P.M. His condition was critical and deteriorating. The PICU had been kept informed by phone, but it was protocol to give a report anyway, nurse-to-nurse.

"This is Andrew," said Mary St. Jacques. "Six-year-old with possible meningococcemia . . ."

Linakis escorted the parents to a waiting room and let them know the PICU needed a half hour to get Andrew set up. Rebecca and Scott asked if there was something more they could have done to prevent this. He told them there was nothing. They had gotten him in as quickly as any rational parent could. As Linakis phrased it, this was just a bad disease that came on faster than gangbusters.

Mary was in the room as Andrew was placed into his new bed. She did not stay long since there were a lot of people working in there. As she was leaving, she said a small prayer. Inside, the PICU nurses continued the resuscitation even as they settled him in.

Scott looked through the window of Andrew's room. It faced the nurses' station, standard in the ICU, so patients could be watched steadily. They were hooking so many lines and machines to his son that Scott could not keep track.

At last the parents were allowed to go in. Andrew had been placed in an isolation room. To get inside, Scott and Rebecca first had to enter an anteroom and put on gowns, gloves, and masks. Andrew was still awake. He seemed distant. His body had swelled from all the fluids.

"Mom," he said, "I'm so thirsty."

Rebecca asked if she could give him some ice chips.

A nurse told her it wasn't possible.

At least touch a wet cloth against his lips?

"I'm sorry," the nurse said, "but you can't."

Mary St. Jacques went back to the trauma room to clean up. She scrubbed down the table, washed the pumps, returned the monitor to position. She replaced used equipment and medications. When she was done, she asked the others if they could cover for her. She needed five minutes. She went to the break room, where they kept coffee. Once there, while alone, she fell apart for a few seconds.

Jim Linakis returned to his desk in the fishbowl. By then, the department had backed up. Everyone wanted his attention. He had only a minute or so. He lifted the phone and dialed home. His wife, Gloria, answered.

"We just had this really tough case," he told her. "This incredibly sick kid. I don't know if he's going to live."

Linakis had been doing this work for fifteen years, but at such times still pictured his own children. He and his wife had five, ages two to fourteen.

"How's everybody doing?" he asked.

His wife told him everyone was fine. He told her he had to get back to work.

Five hours later, around 6 P.M., Linakis signed out of the ER. He took the back elevator to the PICU. Dr. Monica Kleinman was at the central desk when he got there. She was the attending that night. Linakis considered her one of the best doctors he knew. Andrew was now her patient.

"How's he doing?" he asked.

She said Linakis was welcome to go in and see him. He gowned up. The parents were both there. Linakis could barely believe how much Andrew had declined. His body was so covered with purpura it appeared spackled with tar. Linakis had never seen a meningococcemia patient in such extreme condition. When he first brought Andrew into the PICU, Linakis thought he had a chance at surviving, although with deficits. He no longer believed that.

Ted Kaiser worked a double that day, so it was evening before he got off. Around 8 P.M., he went upstairs to see Andrew. Several nurses were around him, making constant adjustments. Because of their resilience, sick children tend to look better than sick adults. Andrew was not that way. He was puffy and blown up like a balloon. Most of his skin was blackish brown, as if from burns. It was one of the worst presentations Kaiser had seen, including car accidents. Parents, he knew, look carefully at the reaction of the providers, so he worked to maintain his composure.

Mary St. Jacques believed it was best not to get attached to every kid who came through, but there was something about Andrew. Despite being such a sick little guy, he had hung in there. Before leaving for home, Mary went upstairs to the PICU. She approached the attending physician, Dr. Monica Kleinman. She usually didn't address doctors by their first names, but she had known Kleinman for years.

"Monica," she said, "is he going to make it?"

"He's real sick," Kleinman said. "I don't know if he'll make it through the night."

That evening, Mary's sister was expecting her for a cookout. Mary called and explained about the boy she had treated. She said she wasn't up to going out.

"Why don't you?" her sister said. "You'll feel better."

Mary apologized. She knew it was hard for people not in the medical field to understand. She sat by herself in her backyard and sent up another prayer.

The activity around Andrew was nonstop. Scott and Rebecca sat silently next to their son. Something got Scott thinking about Andrew's bicycle. It was shaped like a Harley-Davidson motorcycle. Andrew had seen it in a toy store and for weeks talked of little else. It was waiting for him under the tree Christmas morning. It turned out to be too much bike for him. He continued to try riding it every so often anyway. He couldn't wait to grow into it.