Feb. 4 was supposed to be a super Sunday for the Jones family.
The Philadelphia Eagles and New England Patriots were playing in Super Bowl 52 that evening. Before the game, Ken and Lindsay Jones and their daughters, Maebry and Makenna, went to church as usual at Calvary Christian Center in Festus.
After church, Maebry went home to catch up on homework; in preparing to attend Jefferson College, she took college courses her senior year at Crystal City and skipped going to Makenna’s CYC basketball game that day at St. Joseph Catholic School in Imperial. Afterward, the family was going to watch the big game at their home.
But Makenna suffered a cardiac arrest while playing in the game that day.
Ken Jones is the athletic director and girls basketball head coach at Crystal City High. His two daughters love the sport and Maebry (she turned 18 in June) played for him on the varsity for four years.
Makenna, 5-7, played power forward for her CYC team. Ken said his younger daughter, 12, already is very competitive.
In a couple of years, Ken planned to coach Makenna, who will attend seventh grade at Crystal City Junior High this school year. The idea greatly satisfied Ken, who has been the Hornets’ head coach for 15 years. It meant so much to him, he said, that the thought of Makenna having to watch from the sidelines in high school would cause him to quit.
Soon Makenna will take a stress test on her heart that will help decide whether she can continue playing the sport she loves. She’s due to stop taking heart medication this week. When the drug clears her system, she will take the test. A bad result would be, well, heartbreaking to a family that endured the unimaginable that February day.
“Yes. We might have to tell her she can’t play,” Lindsay said last week at the Jones’ home in Crystal City.
“Mom! Don’t say that!” Makenna objected.
After 54 days in the hospital, mostly spent at St. Louis Children’s Hospital, Makenna attended summer school and went to volleyball and basketball camps. She’s undergoing occupational therapy at Mercy Hospital Jefferson, where she’s already completed physical and speech therapy.
“She knows what she’s been through,” Ken said. “As far as her coaches, everyone knows her story.”
And if she can’t play basketball?
“It would be the end of my career because she is so passionate about basketball,” he said. “I couldn’t be around it knowing she couldn’t be, too. I told her if that happens, I’d buy her the best set of golf clubs money could buy and we’d get good at golf.”
Ken and Makenna spent the Christmas break last year huddled in their great room, mostly watching TV as the two recovered from Type A flu. Ken had plans to take Makenna and Maebry to Georgia over the holiday break to visit his brother, but he had a 104-degree fever. Three weeks before Makenna played the CYC game, she and her mother were diagnosed with Type B flu.
“We were down for about a week,” Lindsay said. “After she got over that flu, she seemed run-down. She wasn’t running a fever, so she was still going to practice and to school. We lead busy lives during basketball season. Makenna practices with her junior high and CYC teams. We were keeping up Maebry’s basketball schedule.”
During that game on Feb. 4, it was the fourth quarter with a few minutes left, and Makenna’s team was trailing. Lindsay said Makenna somehow seemed “off” during the game for someone who knows the sport so well.
“For her to go to one end of the court and not know if she’s playing offense or defense was very strange for her,” Lindsay said. “She looked at her coach like, ‘I don’t know where to be.’ He seemed to be confused by her actions, and I looked at Ken and said, ‘She’s not feeling well.’”
Ken said he was watching something else when Makenna suddenly collapsed in the high post.
“Lindsay yells, ‘Makenna’s down!’” Ken said. “I started to get up and in my 20 years of coaching basketball, I walked toward her thinking it was an ankle or knee. I take a couple of steps and she’s not making any movements and I took off. I saw some eye movement and I had dealt with kids at school before. I started talking to her and was feeling for her pulse, which I felt and she had a good body temperature. That was all good.”
And then it all went bad.
Jennifer French, a mother of one of Makenna’s teammates, is a nurse, as is Ken’s mother, Sheila. Ken rolled Makenna over and started checking vital signs. He said she was still warm but not showing any response. Ken expected some twitching, thinking she might be having a seizure.
“I’ve been around junior high kids and at that age those things start to show themselves,” he said. When it became apparent that Makenna’s pulse was weakening, French began giving Makenna breaths. Makenna vomited excessively into French’s mouth, forcing her to try to regain her own air. Sheila Jones took over, and the same thing happened.
The nightmarish situation was getting worse.
“Two nurses are both out,” Ken said. “I started giving Makenna breaths. I don’t know how many I gave her. A couple times I heard gurgling and I could see she was getting air and I saw her eyes flicker and roll around. I thought I about got her back.”
But that was wishful thinking. Someone yelled to “get the children out of the gym” and someone else yelled to get the school’s defibrillator.
Jones said he had given Makenna about four or five breaths when the doors to the gym flew open and paramedics rushed in. He said they did a quick check and went right to heart compressions and then started with the defibrillator because her heart had stopped.
“About this time, her warmth and skin color was the same,” Ken said. “They hooked her up and hit her and didn’t get a pulse. They hooked her up a second time and I’m down on a knee and Lindsay’s praying. After the second time, they said, ‘No pulse.’ I’m feet away from her and I’m trying to run it through my head and my dad’s walking circles around us.”
Ken said he wondered how many times the paramedics were going to use the life-saving machine.
“The younger they are, the more they can use it,” he said. “For an older person, they might not do it so many times. Right before the third one, her color changed and I knew this was going to get really bad.”
Paramedics stuck Makenna in the shoulder with an epinephrine pen. It’s a chemical that helps that helps stimulate the heart to beat. When they applied the machine a third time, she regained a pulse.
Having re-established that, the race was on to St. Anthony’s Medical Center in south St. Louis County.
Lindsay rode in the front seat of the ambulance. During the trip to the hospital, emergency personnel performed a tracheotomy and had to shock Makenna back to life once more. After the fourth jump-start, Makenna’s heart hasn’t skipped a beat since.
Doctors later told the Joneses that the breaths administered to Makenna by French, Sheila and Ken had helped keep her alive by preventing her brain from starving of oxygen.
Almost as soon as Lindsay and Makenna arrived at St. Anthony’s, Lindsay was told a helicopter was on the way. After about an hour, as medical teams made the helicopter compatible with the equipment they needed to transport Makenna, she was airborne and headed to St. Louis Children’s Hospital.
“The process of getting her helicopter-ready was quite extensive,” Lindsay said.
Before Makenna took off, her family and friends were starting to gather at St. Anthony’s.
Maebry, who hadn’t attended Makenna’s game, knew something was wrong, but like Ken at first, thought it was an ankle or knee injury. Ken made sure Maebry didn’t know the extent of Makenna’s condition until she reached St. Anthony’s.
Maebry got to St. Anthony’s still not understanding why she was there. She walked down the hall toward Lindsay and walked past Makenna’s room. But before Maebry reached Lindsay, someone told her where Makenna’s room was and she walked in and thought she had walked into someone else’s room.
“She looked closer and realized it was her sister and collapsed,” Lindsay said.
After she came to, Maebry couldn’t stop asking what had happened to her little sister.
“Maebry is Ken 2.0,” Lindsay said with a quick laugh. “They have to know the facts, they have to know the basics and you have to repeat it 12 times. That’s how they function. At the point of collapse, I got to crazy mode and started praying. Once Ken handed (Makenna) off to the paramedics, he lost control of the situation. Once the professionals had her, I started to calm down and started to research things on my own.”
Ken became very emotional as he talked about being led to a room at St. Anthony’s, where a hospital staff member was trying to keep the family calm and give them information about what was happening to Makenna.
Ken associated the situation with the time he was asked to go to a similar room at another hospital when his grandfather died.
“This is what it looked like to me,” he said, holding back tears. “I’m already worried and wondering if Makenna’s heart was still beating. This lady’s running through things and I said, ‘Ma’am, I just want you to tell me if her heart is beating.’ And she said she didn’t know. Nothing else mattered to us. When she came back to the room, she told us her heart was beating.”
From despair to unbridled joy
Lindsay’s brother and wife were the first members of the family to reach Children’s Hospital. Ken said there were at least a dozen doctors waiting to treat Makenna. But the doctors were rushing to save her life and the family did what thousands do each year in such a crisis – wait.
It was 9 p.m. when doctors put Makenna into a medically induced coma. It was exactly five hours since she’d collapsed on the hardwood in Imperial.
When doctors finally let Lindsay and Ken see Makenna, “there weren’t too many square inches of her body not covered in something,” Ken said of the array of medical equipment being placed on or stuck into Makenna.
The next night (Feb. 5), in the same gym, where Maebry and Makenna had shot baskets and Ken had coached the Hornets, a moving vigil was held in Makenna’s honor. Members of the community came to pray for Makenna’s recovery. It was obvious one family’s tragedy had stirred the emotions of their small, tight-knit community.
Ken said last week that not a day goes by that someone, either a familiar face or a stranger, will ask how Makenna is doing. Some express their emotions through tears. Ken said some of his most emotional discussions have been with men who have daughters of their own. The kindred spirit that bonds the father-daughter relationship is solid as granite.
Within 48 hours of the Jones family arriving at Children’s Hospital, the flood of texts, phone calls and food started to arrive.
“I was surprised,” Ken said. “And what I mean by that is we have a phenomenal church and we have a really strong family on both sides. I was a little surprised by the outpouring of support from Hillsboro, Festus, Herculaneum, R-7, Perryville and St. Vincent. It wasn’t just the athletic directors and coaches, it was families from these schools. We needed it. In a time where you see a lot of negative things in our society, that was very refreshing for me to realize there were that many good people out there. I won’t ever forget it.”
Nor will he or Lindsay forget certain moments during Makenna’s 54-day hospital stay.
When she first arrived at Children’s, Makenna was swabbed to test for the flu. She tested positive for Type A. The first thing Lindsay and Ken wanted to know is if the flu contributed to her going into cardiac arrest. Lindsay said doctors did two spinal tap tests on Makenna. But the only way doctors could test if the flu had gone to her brain was by doing a brain biopsy, “which of course we weren’t going to do just to find out the flu was responsible,” Lindsay said.
Once at Children’s, Makenna was taken directly to the cardiac intensive care unit. She was put in a room and the Joneses were told they wouldn’t be able to see her while she had X-rays taken of her lungs and an EKG to make sure she was stable.
After that, Makenna was moved from the cardiac floor to the neurology floor. She had two issues: her heart and her brain. After a meeting with the cardiologists, the Joneses weren’t very optimistic about her eventual condition and quality of life once she was discharged.
“She was taken off the ventilator without opening her eyes and waking up,” Lindsay said. “When she’d open her eyes, she’d thrash around.”
Two days after collapsing, Makenna had an MRI scan of her brain. Her lungs had cleared up. However, the process of bringing someone out of a medically-induced coma takes up to 36 hours. When doctors started to wean Makenna off of the medication that induced the coma, she started thrashing around to the point where Ken had to hold her down and keep her from pulling out her IV.
“I told (doctors and nurses) if this is going to be the wakeup process for the next 36 hours, that’s fine, I will have someone hold her down on a rotation, but if it’s not we need to do had collapsed in cardiac arrest and they all were telling me that 2.7 percent of all children under 16 survive. And of those who live through it and get out of the hospital, a very large percentage of them have brain damage. I’m a very spiritual woman and I kept trying to find more information that tells me something I can hold on tonight. And I felt that God told me, ‘Lindsay, these are not the words you need to be reading or the hope you need to be standing on, so put them away and something better will come tomorrow.’”
Ken was distraught. All of the plans he had for Makenna’s future hung in the balance.
“So the next morning, in typical man fashion, Ken said, ‘OK, Lindsay, I have a plan. We’re going to sell everything we own, move to my parents’ farm and we will take care of her the best way we can,’” she said.
The Jones’ daughters are close to both sets of their grandparents, who love to dote over them.
“And I’ve always loved that,” Ken said. “My thought process was Lindsay is going to quit her job, we’ll move to the farm (in Lonedell), I can still work. Makenna loves that farm and the animals. I was trying to get ahead of things. My mom’s shaking her head and trying to stay positive and my dad says they’ll do whatever they need to do.”
The next morning, Ken said the head of the neurological team treating Makenna called him and Lindsay into a hallway and said he’d heard they’d gotten some bad news, but he thought the cloudiness could be something else.
The doctor told Lindsay and Ken that after looking at the second MRI, he believed that instead of brain damage, the cloudiness may have been indication of an infection that caused her brain to swell.
Makenna was then placed on a heavy dose of steroids for the next five days.
Within 36 hours of taking the steroids, Ken said he and his dad were sitting bedside with Makenna. Ken was rubbing her ear and talking to her. He said he was always talking to her, trying to reach her.
Then like a scene from a movie, it happened.
“I said, ‘I sure love you, Turdbucket,’” Ken said, calling her by his favorite nickname. “And she smiled. And my dad said, ‘Say it again.’ And I said, ‘Are you in there?’ She grinned again and we knew we had something. There’s no doubt she was looking and laughing at me. Every day from that point, she got better.”
When Makenna first arrived at Children’s Hospital, the family was told that in the best scenario, she might be able to leave by July. She was discharged on March 29. The family could go home and be whole again.
But Makenna’s journey back to health was just getting started. She faced months of rehab to regain basic motor skills and she had to learn to read and write all over again.
Lindsay and Ken didn’t waste any time as they brought educational materials to the hospital. One of the first things Lindsay taught her were colors.
The Joneses said they are extremely grateful to the doctors, nurses and staff at Children’s Hospital for their tireless devotion to their daughter’s care – from the nurse who spent hours washing Makenna’s hair after it had become tangled and matted by all of the glue from the instruments attached to her head, to the physical therapists who got Makenna walking within 24 hours after she was barely able to stand.
The only surgery Makenna had was when an internal cardiac defibrillator (ICD) was implanted under her skin just below her collarbone. A monitor stays within 10 feet of her wherever she sleeps; it downloads information to the hospital. It’s also a pacemaker. She’ll wear it for the rest of her life.
“If things get wonky, the ICD will charge her to get her heart back into rhythm,” Lindsay said.
'We spent the first three days hugging'
Amanda Fonner and Makenna were playing what resembles volleyball without a net with a bright yellow ball at Mercy Jefferson on July 26.
Fonner, an occupational therapist, is helping Makenna relearn everyday tasks like tying her shoes and writing her name. Makenna already has completed two months of physical and speech therapy.
On Makenna’s first attempt to write her name, it was an unreadable mass of squiggly lines. But last week, her writing was comparable to a sample on hand from before her cardiac arrest.
“Occupational therapy helps with meaningful activities for Makenna, so that’s getting her ready to go back to school and working on (activities of daily living), being able to get dressed, bathe, tie her shoes, dress correctly and her vision,” Fonner said.
“She’s doing amazing. She is leaps and bounds from where we started. We have a ways to go to get her back to where she was before.”
Fonner said Makenna’s motor skills are improving dramatically.
“The biggest thing is with her bilateral integration, incorporating her right and left side together. We still have a deficit for that,” Fonner said.
If Makenna is going to successfully integrate into seventh grade, she’ll need not only to understand her assignments, but be able to talk about them and write them. Elizabeth Kuykendall, a speech therapist at Mercy Jefferson, said every brain injury is different. Progress depends in part on how hard a patient is willing to work.
“It was a lot of assessing how she was going to function back at school in distracted environments,” Kuykendall said. “How was she going to be able to read and sound the words out? Would she be able to write down her assignments, remember to do them? With her visual processing, we all worked together to make sure she could be functional.
“When we started, she was just identifying letters. Now she’s placing them in order and seeing them as a whole. It was difficult to turn the letters into a word at first. When it started to come back, it came back in waves. Usually in patients, these functions come back in small steps, but she’s been making leaps and bounds thanks to that young, malleable brain.”
Makenna’s short-term memory is returning. She can handle higher-level concepts, like being able to tell you about something complex like the hydrological cycle, or details about Rosa Parks, Abraham Lincoln and basketball drills, but the alphabet or simple math equations are still works in progress.
“She still has her wits and sarcastic sense of humor,” Lindsay said. “She’s a little more cautious about things. Maebry is the daredevil in the family. Makenna’s filter left her. She will tell you exactly what she’s thinking. She woke up left-handed and she’s right-handed. It already went back to normal.”
In a simple explanation of what happened sometime between cardiac arrest and her heartbeat returning, Makenna’s brain was waterlogged. Once the water dried up, all of her electrical currents were shut off. And the only way to turn them back on is to read, write, walk, run, jump and talk for them to reconnect.
After the Joneses got home, Lindsay said they all sat on the couch hugging for three days before anyone ventured around town, surely knowing a community was starved for information about Makenna’s progress.
Makenna Jones will reconnect with her teachers and friends this month when school starts. She said she doesn’t remember much about the day she collapsed, other than going to church. She said she’s fine with her dad’s nickname for her and she’s really glad to be at home with her dog, River, a German shepherd. She said she wants to thank everyone for their prayers.
She just has one request.
“I’d like people to treat me like they always did,” Makenna said.