The story I am about to tell could be the story of a young girl of twenty-five who has cystic fibrosis. It could be the story of a mother who nearly lost her daughter and didn’t, and it could be about what happened to a family. It’s really a story about how strong human beings are, and capable, and resilient. Not weak, strong. We can do, and then move for- ward, and do again. We have to think of ourselves as tough like that young girl of twenty-five was tough, and her moth- er, too. This is a story about things that should not happen to a person but sometimes they do, and this time did.

Let’s get this part out of the way in one sentence, though reading it twice may be necessary.

What is cystic fibrosis?
Cystic fibrosis is a recessive genetic disease

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causing the mechanism that releases sodium chlo- ride from the cells to be faulty, imbalancing the body mucuses, making them thick and sticky and harbor bacteria, impacting the sinuses, lungs, and gut, and shortening the life expectancy.

Jackie had always been “followed” at Inova Fairfax Hos- pital. The medical community does follow people with dis- eases and that’s what it feels like, being followed, necessary, appreciated, dreaded in a way like the diagnosis that would follow Jackie her whole life, though she would not let it get in her way. And then it did. “Inova” is one of those names assigned to a regional medical system and ours is grand, so I always believed, as a mother with hope, it meant “Inno- vation.”

Jackie had several sinus surgeries, the first before age two, a solution for quality-of-life decline, and this time as well. She entered Inova Fairfax Hospital’s Heart and Vascular In- stitute for the sinus surgery expecting to return to work the following week, summer plans set before her. She was living her life as young people do, out on her own and working, yet fragile, lacking endurance, exploring a lung transplant a ways away. Watching her leave on that stretcher entering the sinus surgery, I tucked my head as I’d done before and prayed her lungs would be safe.

I expected a recovery dip in lung function, felt a deep- down dread. Dread is something mothers of children with diseases live with, along with a broken heart held together by determination. The sinus surgery went well, her sinus- es were clear and she would feel better, my ever-familiar post-surgery mind mantra. That night, I lay beside Jackie determined that she would get comfortable and move on

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to healing. Instead, we were transported as a precautionary to an intensive care unit. Her heart rate was up a little and vital signs were off a bit. They did calm down.

Jackie’s recovery from sinus surgery remained in order that first while. She was presenting well, animated, leaving the two-day ICU precautionary the following morning. By dinner, a friend was visiting and Jackie called to ask that we come anyhow. Her dad and I did as we had done many times before, yet this time was different. She wasn’t used to ICUs, was asking herself why she was there, if she was okay. Once we returned home that night and her dad settled in, I returned to the hospital, hurried along that well-worn path back to Jackie, then with a high fever that quickly flipped before my eyes into an emergency that would take us down a path we’d never traveled.

Dr. Svetolik Djurkovic, pulmonary intensivist, clini- cal interest: severe infections and respiratory failure, in an all-night effort, pulled Jackie out of respiratory arrest until cardiac arrest was imminent. The heart can only compen- sate but so much. She tried hard throughout the night to respond to the external ventilator, gasping, “How am I do- ing, Dad?” He had come during the night as well as her Aunt Anne. We were there, watching, encouraging, hop- ing, disbelieving. By morning, Jackie plunged by way of doctor into a medically induced coma, and intubation. Be- fore the inevitable, a panicked, “Promise me I’ll wake up!” Dr. Djurkovic did, an unconvincing promise Jackie would wake up.

He and his team left Jackie in the care of the ICU team, no longer a precautionary. Our Jackie had that tube insert- ed into her mouth, down in her airway in one direction, and in the other direction, out of her mouth into a venti-

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lator like a nightstand I’d never seen before with numbers and knobs and beepers and alarms, respiratory therapists and nurses controlling the flow, and multiple pumps by her side on multiple poles, multiple tubes running intrave- nous infusions into our girl, throwing every intervention at the dangerously high fever and infection that overtook her lungs in the night. They looked at her father and me, we looked at them, the unstated truth Jackie would likely not survive. Jackie did not have a heart attack that night yet did remain in that Coronary Care Unit.

Voice shredded, I called her brother, Byron, in a rush of emotion, “It’s Jackie! You have to come now!” He cabbed to the Boston airport, bought a ticket, boarded a plane, and by noon entered Inova Fairfax Hospital’s Heart and Vascular Institute just outside of Washington, D.C. That night, By- ron created a “Jackie Get Well Update” social media group. “Hey Everyone. My sister isn’t doing too well right now and I thought I would throw up this group. We will give updates and please feel free to write good wishes.” He continued to describe the sinus surgery and the respiratory free-fall that followed, the intensive care unit, blood pressure and oxy- genation issues, and optimism of the doctors and nurses.

No visitors were allowed in that room. Concerted effort to keep Jackie’s vital numbers by way of machines in a range of survival remained in that room. It’s all about numbers and in this league of medical care, the numbers are in the hands and heads of the doctors, and the hearts. These peo- ple don’t do this work because they are bored. It’s an amaz- ing package, just like the recovery they orchestrated for Jackie and for that, I love them. What is it to love strangers, to love those just met, their voices for the first time heard? The complexity of it all was kept simple for our sake as we

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placed our daughter further and further into their hands by way of trust.

Jackie was in one-on-one, two-on-one, sometimes three- on-one care, in critical condition due to pneumonia, more specifically a quiet and wicked collusion between bacteria and a rare fungus attempting to overtake her. Her brother wrote again. “Her doctors are hoping her body and a ridic- ulous amount of antibiotics will fight the infection in this resting state.”

An amazing team of intensive care doctors put their minds together as her condition worsened. Our son wrote, “The doctors need complete silence to do their work. Un- fortunately, the process will be longer than originally ex- pected. This is brutal.” The infection was mean. The med- ical team’s fight was tougher and more determined than the infection was mean. As one nurse said after two hours in the care of Jackie, “Whoa, that was hard.” I’ve always said hard doesn’t mean we don’t do it. Hard it was, and they did it.

There were a couple of days of constant care and hopeful healing with gentle background music, lights turned down low, us keeping back and quiet. They were doing their best yet her condition worsened. By morning, three days after the first pulmonary free-fall and after a no-worse night, yet another. In a major medical bind, uneventful is good. What was to come was not.

Her dad and I heading down the ICU corridor came upon an emergency and the emergency was ours, a team of prepared, brilliant minds orchestrating a complex plan to save our daughter again, people hurrying about in a blur, determining what to do next, and fast. Jackie’s lungs lay inside her on that bed ignited by infection, this second dive to destruction.

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Unimaginably, we came upon Dr. James Clayton, pedi- atric pulmonologist who brought Jackie through childhood starting in the Neonatal Intensive Care Unit. He, too, was coming to visit Jackie, being the amazing soul that he is. I paced half-breathing, half-hearing the voice I trusted all those years. “You watch,” he told my husband. “He’ll save her. He’ll do it. Just watch.” Dr. Clayton talked my hus- band through the crisis madness managed back to sanity by Dr. Christopher King, pulmonologist, intensivist, the mind that saved Jackie that day and in the days to come. I came to call the doctors The Knowing Ones and Dr. King, The Knowingest One, because he saved her at the worst and kept saving her.

It must have taken ten medical professionals to trans- port her hospital bed to surgery where they put Jackie on an external lung machine, lungs made of metal and hoses, pumps and filters. This extraordinary technology, ECMO, seemed to be new in this particular and terrible circum- stance, we thought they said. Who knew? We were no lon- ger on the planet earth. We were in some other universe, one we could not imagine a week before sitting at dinner with Jackie talking about her PowerPoint presentations for work.

The expert in the use of this Extra Corporeal Membrane Oxygenation, so we learned, worked remotely with this Heart and Vascular Institute, traveled there monthly and was there that day. They made a plan. They implemented the plan and for the time, it was working. ECMO gave Jackie a fifty percent chance of surviving as they controlled her vital signs remotely and prepared her for a bilateral lung transplant, a serious surgery with a rough recovery.

None of the expected times had come true as we waited

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and as Jackie’s condition grew increasingly more complex, yet the goal remained to receive new lungs, wake up one day, spend time again with friends and family. Jackie’s Un- cle Mark who flew for the military was there that first week, watching those panels on all those machines, like watching those panels in the cockpit of a fighter jet. Jackie was finally stable in a critical-condition kind of way, by way of ma- chine, but stable yet.

We sat there, cousins, aunts and uncles, loved ones, and waited for the doctors to work their long-acquired magic, that ability to save people teetering between life and death. What became pretty were Jackie’s vital numbers; what was not pretty was Jackie in that bed moved to the Cardio-Vas- cular Intensive Care Unit surrounded by yet more tubes running in and out, more panels of numbers flipping up and down, all those machines and that constant medical care. Jackie was not getting up the next day, not going ea- gerly to Lidl, leaving work to get together with friends and just be Jackie. Jackie was alive and sick as a person could be. We believed she would live. This is the story of how she did.