‘She just lives inside herself’

Joe Hart wakes up at 3:30 every morning for work and says goodbye to his 7-year-old daughter Kadee. Joe, 32, drives for Evco Wholesale Food Corp., and although he works about 55 hours per week, Mondays are longest. Joe logs more than 400 miles during his weekly drive to Medicine Lodge.

Joe’s wife, Lori, 28 rises before 6 a.m. to get one of their four daughters ready for school, and at 8:20 a.m. a car pool arrives to pick up 9 year old Courtney. Then Lori takes care of Kadee until 10 a.m., when the nurse arrives, so she can leave to run her daily errands.

Lori must wait for the nurse because she cannot leave 7 year old Kadee unattended. It’s not because Kadee might get into trouble or get hurt. It’s because she might die.

The Worst Thing

Kadee almost did die five years ago. At her grandfather’s home in Port ST. Lucie, Fla., 2 year old Kadee walked out of the house to the swimming pool. Kadee’s sister Courtney, who then was almost 4 years old, was the only person to witness the accident. Courtney said she was taking an afternoon nap when a noise woke her up. She looked outside and saw that Kadee had gone out the door leading to the pool.

“She didn’t know how to swim, but she liked the water,” Courtney said. “And she always went in with her floaties.”

After she tried to put one of the flotation devices on her arm, Kadee went to the shallow end of the pool and accidentally fell in. When Courtney saw Kadee go under, she ran to get her grandfather, who jumped in the pool and pulled Kadee out. When he saw Kadee wasn’t breathing, her grandfather called 911.

A police officer reached Lori at work and told her one of her daughters had been in an accident. He took her to the hospital, where she found out it was Kadee. It took 23 minutes to reach the hospital, and when she arrived, the doctors told her they had just restarted Kadee’s heart.

“I was in shock,” she said. “Just total shock. I don’t remember a lot of it, but when you see your kid in the hospital with all that equipment hooked up to her, it’s the worst thing in the world.”

Kadee almost drowned on the afternoon of Aug. 10, 1992, a month to the day after her second birthday, she has yet to wake up.

Getting Better

Kadee was taken to St. Mary’s hospital in West Palm Beach, Fla., and hour’s drive from the Harts’ home in Port St. Lucie. During the five weeks Kadee was in the hospital, Joe, Lori and Courtney put more than 10,000 miles on their car driving south along the East Coast of Florida.

The Harts spent as much time as possible in the intensive care unit with Kadee--so much, in fact, that the hospital gave Joe, Lori and Courtney a room to sleep in for a few days. Mother Nature was the only force strong enough to keep the Harts away. In late August, Hurricane Andrew struck the Florida coast, shutting down the roads for a day.

Soon after Kadee was admitted to the intensive care unit, the Harts brought her older sister in to see her, and Kadee gave signs of recognizing Courtney’s voice.

“When we brought Courtney into the ICU, that was the first time Kadee had reacted to anybody,” Lori said. “She had a little movement in her hand and foot, so even though they weren’t suppose to, the nurses brought Courtney back in to see Kadee every day.”

When Kadee fell into the water, she suffered anoxic encephalopathy, which means the blood traveling to her brain was not carrying enough oxygen. She quickly entered a hypoxic-ischemic coma--brain cell death from a low supply of oxygen.

Kadee suffered severe neurological impairment from the accident, but she did show some signs of improving, Lori said, like coughing, swallowing, sitting up and turning to the sound of familiar voices.

“There wasn’t a lot there, but it was a lot for us,” Lori said.

Since the accident, Kadee has spent most of her life in bed, unable to communicate with her family. She sleeps in the dining room, the only room on the ground floor big enough for her hospital bed.

The Harts have been adamant about keeping Kadee at home and not in an institution.

“Kadee’s not something to hide,” Lori said. “She’s just one of the family. This year Courtney told her entire third-grade class about Kadee. She’s not afraid of what others might think anymore. And for what people really do think about it all, I really don’t have the energy to worry about it anymore.”

No one knows

Two months after the accident, Kadee suffered a universal brain hemorrhage. Blood pooled in her brain and caused even more damage.

“The doctors said the two weren’t related, but they thought the drowning might have brought in on early,” Lori said. “No one knows how she survived, it was so massive. They all told us that if the accident hadn’t happened, one day when she was 7, Kadee would have gone to bed and never woke up.”

Kadee breathes through a tracheotomy apparatus inserted in her windpipe after the accident. Because of the hemorrhage, she cannot straighten her body. Electrical impulses in her brain continuously misfire, forcing her body into a position that may eventually kill her.

The misfirings give Kadee an ailment called lordosis, which, starting at the shoulders, twists her spine into an “S” and squashes her internal organs together. Kadee’s hips have popped from their sockets because her legs are pulled almost perpendicular to the rest of her body. Her knees will not bend, and she cannot straighten her arms.

Kadee cannot care for herself. She cannot roll over. She cannot speak to tell her mother if she hurts or is too cold. For about 21 hours a day, Kadee lies in bed, practically motionless, except when Lori or the nurse exercises her limbs and places her in her wheelchair. Kadee shakes her arms and her body a little when she gets upset, her mother said, and she has normal sleeping cycles, but she has remained in a persistent vegetative state since the accident.

Kadee’s longevity is extremely rare, said Dr. Greg Chediak of the Internal Medicine Associates in Emporia. He said most patients with Kadee’s injuries either show recovery or die within the first year.

“People are very afraid of it, and sometimes the fear is overstated, but the likelihood of developing into a vegetative state is very low,” Chediak said. “Only one in 500 (comatose) people, at the end of a year, have the potential to be in a vegetative state. Most either show recovery or die.”

Doctors say no one sign can predict a coma patient’s survival. Instead, they rely on clusters of signs. Before her brain hemorrhage, Kadee was improving and exhibited some of these signs. She could breath on her own and had recovered a few reflexes.

“It’s very hard to figure out an outcome,” Chediak said, “but in general, the less time a person is in a coma, the better chances for a recovery. Time is a very important issue.”

At first, Courtney didn’t really know what had happened to her sister, but she knew something was seriously wrong.

“Courtney thought Kadee had died,” Lori said. “And in a sense she did, because she’s not the same. But it took Courtney a long time to realize exactly what had happened -- probably not until she started school. I think Courtney’s grown up a lot faster than she would have otherwise. It’s pretty amazing when you’ve got a 9 year old talking about life and death.”

Before the accident, the two sisters played “undifficult” games, Courtney said. She remembered Kadee chasing her around the house, trying to tag her. Normally Kadee couldn’t run fast enough, but occasionally Courtney let her sister catch her. The two also liked to play hide-and-go-seek.

“One time when I hid in the corner, Kadee couldn’t find me,” Courtney said. “So I had to come out.”

They don’t play together any more.

All the little things

When Kadee’s accident happened, Joe and Lori had just begun their family. Married in 1998, they had little savings and couldn’t afford insurance. Now they owe about a half a million dollars in medical bills.

Even with out the hospital bills, the Harts often have trouble making ends meet. In addition to rent and food, the Harts pay $200 to $300 in electrical bills each month. The lights and television are kept on around the clock because someone is always awake with Kadee.

Kadee’s internal thermostat in her brain cannot regulate her own body temperature, which makes heating especially costly because the room temperature must be kept warmer than normal.

Medical supplies cost another $200 a month -- bills Medicaid will not pay. Hydrogen peroxide, baby wipes, shampoo, alcohol, special laundry detergent, garbage bags, diapers, special food and bed pads, not to mention the various medicines Kadee takes, deplete quickly, so Lori spends a few hours each day on the phone ordering more.

“It’s not one single thing that’s so expensive,” Lori said. “It’s all the little things that add up.”

Federal assistance, called Supplemental Security Income, helps pay some of the Harts’ expenses. But the main problem with SSI, Lori said, was that the payments are based on their monthly income and restrict ownership of more than $2,000 in assets.

“And that’s ridiculous,” Lori said, “because it should be based on the severity of the disability.”

Joe earns about $4,400 too much to qualify for free assistance from Kansas Legal Services, where the family asked for help in declaring bankruptcy.

“We slip right through the cracks.” Lori said.

Legal Services does not consider bankruptcy a priority-type case, so their attorneys regularly refer applicants to private attorneys, whom the Harts cannot afford.

But Joe said he doesn’t think filing bankruptcy would help them. It would wipe out their debt, but their financial future would be affected.

“Eventually we want to buy a house,” Joe said. “We’re still planning for the future.”

They can only think about the present, though.

“We’re not dirt poor, but we sure can’t afford to live, either,” Lori said. “We’re just making it by the hair of our chin. I can’t tell you how many times I’ve stood in the bread lines at the Salvation Army. I’ve put off a lot of stuff that we need to pay, like bills, just so we can survive. Sometimes it’s just hard to feed everybody.”

Harassing letters from creditors fill their mailbox. Lori said that after months of opening each one she began throwing them in the trash, depressed because she didn’t want to read them but couldn’t stop them from coming.

“We can barely put food on our table,” she said. “It’s like getting blood from a stone.”

Adjusting, coping, living

The Florida hospital flew Kadee to the Meadowbrook Rehabilitation Center in Gardner on Sept. 16, 1992. Lori flew with Kadee while Joe and Courtney drove to Johnson County, where they eventually settled -- a two-hour drive from Joe’s parents in Garden City, Mo. Joe took a job at a bakery, and he also drove part-time, delivering siding and windows.

The Harts lived in Gardner for a little more than four years before they moved to Emporia because of housing expenses. When they moved, Joe started driving for Evco, a job he said he likes better than previous ones. But long trips on the road also give Joe a chance to think - and worry.

“The hardest part for me was when the doctors said we’d have to go into hospice care,” Joe said. “It was hard to hear that -- face the fact that she wouldn’t get better.”

Joe and Lori have two more daughters -- 4 year old Alyssa and 22 month old Amberlee. They don’t know Kadee from before the accident. They just know how she is.

“Alyssa tells people that her sister can’t walk, that she can’t talk,” Lori said. “She doesn’t really know why, just that Kadee’s sick. She talks to her just like she would anyone else.”

The Harts also worry about themselves and their children. Lori said she couldn’t remember the last time she and her husband had time to themselves or enjoyed a family outing.

“We rarely get a free moment,” she said. “We don’t get much time together, no. I guess I don’t know what it’s like to have my own house. It’s almost gotten to the point where I won’t know what to do if Kadee ever passes away and I have the house to myself.

“I’d like to be able to take my daughter outside -- go to the zoo, go to the store, go to a restaurant as a family. I’d be poor a thousand times over if I could give my daughter a day of happiness. She just lives inside herself -- that’s what she does.”

Death and life

Kadee has outlasted everyone’s expectations, but time is not on her side. Her parents said they have tried to think realistically, and they know Kadee’s condition is not likely to change soon.

“Kadee’s at a stable state right now,” Joe said. “She’s a tough kid, and we don’t expect her to pass away tomorrow, because she won’t, but I don’t expect her to get better really soon.”

Lori has been told too many times that Kadee’s death was imminent.

“When it does happen, I know it’s going to kill me,” Lori said. “I’ve prepared for her death so many times, I want to make the rest of her life as good as possible. But Courtney’s told me that it’ll be OK when Kadee dies, because then she’ll be able to walk and talk and run. Courtney said, ‘I know Kadee knows you love her, because you kept her home and you loved her no matter what.’ She’s unbelievable.”

The Harts have already arranged most of Kadee’s funeral. They have decided to bury her in Missouri with the rest of Joe’s family. Only a couple tasks remain, like notifying relatives and taking her to the cemetery.

“As long as Kadee’s alive, we’ll stay in Emporia. After that happens, we’ll probably move closer to my parents,” Joe said. “But then again Kadee might live longer than all of us.”

“I’ve always tried to plan for the future, but that’s where Lori and I’ve had some conflict. We’ve both come to realize that we can only do what can right now. We’ve had people promise us things before. We’ve waited, waited, waited -- and then nothing. Our philosophy has kind of become that we can’t hold our breath until things happen, especially with Kadee. We’ve learned that we can’t plan our lives on something that isn’t sure. We always have to look at right now.”

And planning includes preparing for the moment of Kadee’s death. When the Harts realized the seriousness of Kadee’s injuries, they placed her on a Do-Not-Resuscitate order -- and instruction to doctors not to attempt to save Kadee’s life if she stops breathing.

“It was the hardest decision I ever had to make,” Lori said. “I wouldn’t wish that on my worst enemy. It would have been easy to choose if it were me, but it’s so hard when you have to consider it for someone else, especially your daughter. You know it’s always back there, but you have to try to get on with your life. You have to actually try.”

Joe and Lori Hart work every day to keep going, to make it to tomorrow. They rise each morning, still tired from the day before. But they don’t fall back in bed -- they can’t.

“So many times I’ve heard that Kadee’s not going to make it,” Lori said. “It’s like she hears it and says, ‘I’m going to spit in your eye.’ and if Kadee can do it, I sure as well can.”