Jun 29, 2016
LOVELAND, Ohio — It's a school day in May, and the porch lights are shining outside the Kadish house long before the sun rises.
Scott and Alexia Kadish are awake to start the day with Ethan, their teenage son who was struck by lightning on a clear day at his summer camp on June 29, 2013. The lightning strike stopped Ethan's heart, and for many minutes his brain didn't get enough oxygen. The brain injury left him unable to talk or walk or take care of himself in the most basic ways.
The Kadishes feel fortunate Ethan survived and is showing signs of recovery. He can blink to answer questions now, and he smiles and laughs far more often than he cries out in pain or frustration.
Still, the days with Ethan can be draining. He's a growing boy with long, thin legs and a wispy mustache that needs shaving. He's getting harder to lift and move from his bed to his wheelchair. Even the smallest tasks take time, patience and planning. And that's why, although Ethan's bus won't arrive until almost 8:30 a.m., the day starts much earlier.
On this particular Monday, Ethan has been stirring since 4 a.m. His night nurse has made sure he is comfortable. Scott and Alexia Kadish walk downstairs from their bedroom at 6 a.m. and start the coffee while their younger daughter, Elyse, gets ready for school. The Kadishes get reports from the night nurse about how Ethan slept and begin planning for the day.
"It's like a relay race at our house," Alexia Kadish says. "There's a constant passing of the baton."
The night nurse tends to Ethan's catheter — a device he has needed since a nasty urinary tract infection earlier this year. Ethan gets his first feeding of the day through a tube in his stomach. The nurse cleans the nighttime gunk out of his mouth, clears out his nose and brushes his teeth.
Ethan lies in his room, stirring a bit. Plastic beads dangle from a hook above his bed. The baseball jersey he wore before his injury — signed by his former teammates — hangs near the door.
Caleb Hagan arrives at 7 a.m. and talks with the night nurse. Hagan has been with Ethan for about two years now. He and the Kadishes have a special bond, and Ethan smiles when he hears Hagan's voice.
Within 20 minutes, Hagan has taken over the nursing duties for the day.
Alexia Kadish walks into Ethan's room to greet her son.
"Hi — good morning," she says, rubbing Ethan's head with one hand as she holds her coffee cup with the other. "You really do need a shower. You're starting to smell like boy."
Hagan rushes to his car to get the shoes he will need after Ethan's shower. Alexia Kadish trades her slippers for flip-flops before she and Hagan undress Ethan. The two stand on either side of Ethan's bed and slide a blue sling under his rump. The sling hangs from an electric lift on the ceiling that they use to move Ethan from his bed to his shower chair. Transfer complete, Alexia Kadish places squishy, plastic pillows all around her son to support his twisted, crooked back.
She and Hagan buckle Ethan in and roll him into the bathroom adjacent to his bedroom.
Ethan pokes out his tongue as his mom turns on the water and checks the temperature. Hagan slides the chair into the shower, and Alexia Kadish uses the hand-held sprayer to get him wet. She and Hagan begin scrubbing Ethan with Old Spice body wash.
They had been using an apple-scented body wash, but one of Ethan's other nurses said it wasn't working for him.
"No apples for you," Alexia Kadish tells Ethan. "That smells good."
Ethan groans happily when it's time to shampoo his thick, dark hair.
Mom and nurse rinse off Ethan then each grab a towel to begin drying him.
"That's a good shower," Alexia Kadish says as Hagan mops water off the bathroom floor. "And see, we hardly get wet at all."
Scott Kadish is ready for work and has gone downstairs for a conference call before he heads to the office downtown. He likes to work from home in the mornings in case Ethan needs extra help with anything.
Alexia Kadish wipes down Ethan's bed and changes his sheets. She and Hagan spray deodorant under his arms and get him dressed. Hagan packs Ethan's backpack with the food — two, small jugs of green liquid that Ethan's mom has blended from a special recipe designed to help him heal.
Hagan reaches into a cabinet filled with gray tubs that are labeled "syringes," "ostomy" and "ingestion," and he grabs the supplies he will need for the school day.
Alexia Kadish squirts two, tiny drops of peppermint oil onto her fingers and mixes it with ointment that she smears on Ethan's lips as he smiles.
"Ethan was a big gum chewer so I figure the peppermint is reminiscent of that smell," Alexia Kadish says.
By 10 minutes past 8 o'clock, Hagan has wheeled Ethan into the Kadishes' front room near a device called a "whole body vibration plate." He and Alexia Kadish place Ethan's feet on the device and flip the switch to start a gentle shake.
Ethan has broken two bones this year and has been losing bone density. The machine is supposed to help strengthen his bones. Although the Kadishes have had the device for fewer than two weeks, they already have noticed a difference.
"Last week, on the right foot, we could only get his heel down," Alexia Kadish says. "Now the front of his foot touches, too."
Hagan grabs Ethan's glasses. By 8:24 a.m., he and Alexia Kadish are slipping Ethan's socks and shoes onto his feet. They're ready when the bus arrives at 8:28. Ethan's mom waves goodbye as Hagan pushes him onto the wheelchair lift and then boards the bus to go to school.
Ethan's bus pulls up in front of Bobbie B. Fairfax School in Madisonville. This is Ethan's first year at the school, which is operated by Hamilton County Developmental Disabilities Services. Before this year, Ethan was going to Loveland City Schools, where he was a student before his injury. But Ethan's parents decided he needed the more intensive services and therapies that Bobbie B. Fairfax School could offer.
Hagan signs in at the school's office and wheels Ethan to the cafeteria for morning movement. Ethan and several other students in wheelchairs watch videos on a screen while music plays and the school's arts and culture teachers help them clap and move their arms.
After a few songs, Ethan and his classmates go to their classroom with their nurses pushing their wheelchairs.
Ann Heuker, Ethan's main teacher, greets them and shows each student flashcards so they can pick the songs they want to hear. When it's Ethan's turn, Heuker asks him if he wants to hear a song from "Phantom of the Opera," one of his favorite musicals before he was hurt.
"You want to listen to 'Phantom?' Blink for me," Heuker said. "There we go. We got a blink."
Shortly before 10 a.m., Sherry McMillan, a physical therapy assistant at the school, arrives.
Hagan removes Ethan's glasses before he and McMillan lift him out of his wheelchair and onto a bed with pillows piled beneath his legs, under his head and propping up his left arm.
"Did you have a good weekend?" McMillan asks Ethan as she stretches his arms and legs.
She wipes his nose, and Ethan smiles just as speech therapist Joyce Geng enters the room.
Geng sits in a chair next to Ethan.
"We're going to work on your book some more. Are you excited?" she asks him. "We're going to see if we can shape those sounds into some words today."
Geng taps Ethan's ribcage and tells him to remember where the air comes from. Ethan smiles and soon Geng begins to read an adventure story.
"What would you say if a shark was after you?" Geng pauses to ask Ethan. "Eeeeeeeeeeeeee."
Ethan squeals as Geng reads and strokes his hand.
"What do you say when you're nervous? You say, 'Ohhhh, nooooo.' Make your lips round," she tells him.
She gives his cheeks a squeeze and says, "Your turn."
By 10:35 a.m., Ethan is tired. Geng asks him to blink if he wants to rest for a bit.
"He has chosen to rest a little bit. We'll come back," she tells Heuker.
Before long, it's time for Ethan to wake up for his first feeding.
Hagan and Heuker remove the pillows from all around him and lift him into his wheelchair.
Hagan tilts back the chair and adjusts Ethan's shirt before sitting him upright for lunch. Hagan measures some water and turns Ethan's chair. He unzips pocket after pocket and pulls out plastic bags filled with everything he needs to feed Ethan before pulling on some rubber gloves to get started.
He fills a syringe with the green, liquid diet that Ethan's mom prepared and squirts it into a tube that bends into the shape of a smile. He follows those steps again and again until the green liquid is gone.
Ethan is finished eating, and Heuker wheels him next to Vincent Davis, another student in his class.
Heuker places a switch near each boy's hand and explains that they can push the switches to make cartoon bumper cars move on a video screen in front of them.
The boys smile as Vincent's nurse, JuDee Brown, cheers him on.
Ethan is winning, eight to seven, as Brown shouts, "C'mon Vinnie!"
Vincent scores and ties up the game.
Within a few minutes, Ethan scores twice more and wins.
By 11:15, Heuker moves to another activity. She presses a button to make a recorded voice say a number. Then she taps Ethan the same number of times.
By 11:30 a.m., Bruce Weil arrives. He's a vision specialist with Hamilton County Educational Service Center who works with Ethan at school.
Weil runs through exercises to help Ethan with eye contact and following lights and objects with his eyes.
By noon, Weil is finished. And Ethan is tired.
McMillan comes back to Ethan's classroom to get him into a device called a "stander." It takes nearly an hour to get Ethan strapped into the device in a standing position to help build up his strength and bone density.
Ethan grimaces and groans. He clearly does not enjoy the stander.
"Let's see if we can do 10 minutes," she tells Ethan as he complains. "You think you can do it for 10 minutes?"
The nurses and teachers take Ethan and his classmates to their art and music class. Hagan pushes Ethan's wheelchair behind them. Soon after they get to class, it's time for Ethan to leave the stander and go back to the comfort of his wheelchair.
As Ethan's classmates and their nurses tap on instruments and listen to music, Hagan and McMillan undo straps on the stander and remove Ethan's leg braces. By 2 p.m., Ethan is back in his wheelchair and turned toward the front of the room so he can join the class activities.
The nurses and teachers shake laminated colors and flash cards and clap and snap with the music.
Ethan looks at Vincent and Brown and smiles. Hagan looks at the clock and realizes that Ethan needs to eat again before he goes home. He whisks Ethan out of the room and down the hall back to his classroom.
There is only so fast Ethan can eat through the tube in his stomach. Everything has to be mixed and administered just right.
Hagan has mastered the art.
He squirts one syringe of food into Ethan's feeding tube at a time, closes a clamp on the tube and sets it down before refilling the syringe.
"You've got to give it time," Hagan says. "Or it all comes back up."
He looks at Ethan and smiles.
"We're still on schedule. You've got two more to go."
By 2:38 p.m., Hagan has finished feeding Ethan the liquid food. He pours the water from a measuring cup into the tube then begins cleaning up.
By 2:45 p.m., Ethan's bus has arrived. Hagan pushes his wheelchair onto the lift, and Ethan smiles broadly.
He's on his way home for the day.
Ethan's bus pulls up to his driveway and stops. Hagan pushes his wheelchair onto the lift as a bus attendant straps the chair in place before lowering it.
By 3:35 p.m., Hagan and Ethan are in the Kadishes' garage, going up the lift and into the house through the kitchen door.
Hagan explains that Ethan ate right before the bumpy bus ride. He tells Alexia Kadish that Ethan needs to sit still for a while to let the food settle. They take Ethan to the patio out back to enjoy the fresh air.
Ethan's sister, Elyse, pokes her head outside to ask about going to a friend's house. She leaves with her homework in tow and instructions to be back in time for dinner.
Hagan tells Alexia Kadish about Ethan's day while Ethan sits and dozes in his wheelchair.
It's been a busy day at school, and Ethan is tired.
Hagan is gone, and it will be 10 p.m. before the night nurse arrives.
Alexia Kadish fed Ethan at 6 p.m., and tended to his catheter at 6:30 p.m.
Now it's dinnertime for the rest of the family. Ethan's older brother, Zakary, isn't home yet. He's finishing up exams at college.
So Alexia, Scott and Elyse Kadish sit around the dinner table with Ethan scooted up nearby.
They scoop white chicken chili into bowls and talk about plans for the coming days.
"So you know, tomorrow I'm leaving," Alexia Kadish tells Elyse. She will be driving to St. Louis with a friend to pick up Zakary from college. "I want to make sure that we're all on board with where everyone is and when."
Elyse lobbies for take-out food from one of her favorite places while her mom is gone, but Scott Kadish isn't convinced.
"Daddy, Daddy, Daddy…" Elyse pleads with him.
"Ethan, what do you think of all this?" Alexia Kadish asks. "Do you hear your sister?"
Ethan's eyelids look heavy as he dozes on and off.
Alexia and Scott Kadish review plans for Ethan for the next day.
His class will be going to a movie, and Alexia Kadish and Hagan have talked about how to adjust Ethan's schedule so he gets enough to eat and so his catheter can be tended to at the right times.
"There's definitely flexibility in Ethan's feeding schedule," she says. "What we need to be careful about is his cath schedule."
Elyse stands in the living room, wearing sparkly shoes and holding a binder to practice her Hebrew.
Ethan rests in his wheelchair near the dinner table as his mom sits curled up on a recliner under a blanket.
Elyse reads, raising her voice to get Ethan's attention from time to time, but he doesn't stir.
"That sounded great," her mom says. "I think that's the best I've heard it so far."
Scott Kadish slides onto the couch to listen to Elyse.
"Blessed is God and deserving of the blessing," Elyse says. "Please rise and join me on page 124."
Elyse stumbles a bit, and her mom helps her.
"Help me withdraw for a while from the flight of time. Let me find peace on this day. Let me enter into a quiet world on this day."
Elyse practices the service she will lead during her Bat Mitzvah a few weeks later.
"May you find true rest," she says.
And as Ethan sleeps, it's almost as if she's talking to him.
"Let us feed the world with goodness."
Elyse gets to the point in the service where she will need to carry the Torah around Rockdale Temple's chapel. She scoops up Cincy, the family dog, and begins to carry her around the house with her parents close behind.
"We think Cincy weighs about as much as the Torah," Scott Kadish explains.
Elyse stops at Ethan's wheelchair and bumps Cincy against his arm. It's a dry run for when Ethan will be able to touch a far less furry book of the Torah during the Bat Mitzvah ceremony.
"I don't think he's waking up," Alexia Kadish says with a smile.
Scott Kadish squirts water into Ethan's feeding tube before his last feeding of the night.
Alexia Kadish can't stop yawning. But she needs to make up a batch of Ethan's special food.
She takes chicken that she made in the slow cooker and puts it into a high-powered blender with ground oatmeal, Greek yogurt, spinach, oil, carrots and three containers of prepared formula.
The formula used to be the only thing Ethan ate.
But a new doctor suggested mixing "real food" with a smaller amount of the formula to address Ethan's gastrointestinal problems and discomfort.
The Kadishes think it's helping.
"We've been told the high-powered blenders rip everything apart down to the cellular level, and that gets absorbed into your body even more," Alexia Kadish says. "So every time I turn this on, I think, 'Rip those cells — rip them apart. Heal his body.'"
The blender full of liquid will make five meals for Ethan for the next day.
"Each day it comes out just a little bit different," Alexia Kadish says.
She takes the five small jugs of food and places them in a refrigerator near Ethan's bedroom.
"Hi. Did you have a nice nap?" she asks Ethan as she walks past.
Scott Kadish pushes a tall table over to Ethan's wheelchair with his last serving of food for the day on top. He mixes Ethan's medication and some Omega 3 oil to put into the feeding tube, too. The only medicine Ethan takes these days is Neurontin, which his doctor prescribed to quiet the nerve sensations in his gastrointestinal system. Everything else the Kadishes give him is a natural supplement. And they would like to be able to wean him off the Neurontin, too.
"The less medication," Scott Kadish says, "the less fog."
Fog is how the Kadishes describe Ethan's early days after his injury. They knew he would survive, but they had trouble seeing signs of the old Ethan they knew.
Now there are more of those signs.
There was the production of Disney's "The Lion King, Jr." at Loveland Middle School. Ethan was sleepy when Alexia Kadish and Hagan wheeled him into the school auditorium. But as soon as the music started, Ethan's eyes shot open, and he made happy, singsong noises through much of the production.
And that's not the only example.
"Just a couple of nights ago, we went to services at Rockdale for the end of the religious year," Alexia Kadish says. "Ethan sang through much of the service. The rabbis loved it. They were just thrilled."
She calls them "sounds of life," and the Kadishes are hearing more of them now from Ethan than ever before.
Alexia Kadish wheels Ethan into his room as her husband lowers his bed.
They empty their son's ostomy bag before it's time to go to sleep. Ethan's bowels have not functioned properly since his injury, and they use the ostomy bag to empty his body's waste.
Five minutes later, they are finished with that final chore.
"All right buddy, let's just sit up," Ethan's mom tells him. "On the count of four, we're going to stand you up on your legs and get you into bed."
The Kadishes count to four, and stand up Ethan, who would be taller than them both if his back weren't so twisted.
They ease him into bed and wish him goodnight.
"Have a good sleep," his mom says before they leave the room.
In just a few minutes, the night nurse will arrive. Then the Kadishes will tell her about Ethan's day before they get ready for bed themselves.
Wake-up time is 6 a.m.
How To Help
To help fund the hundreds of thousands of dollars of ongoing care for Ethan each year that isn't covered by insurance, go to http://jointeamethan.org.
WCPO reporter Lucy May and WCPO photojournalist Emily Maxwell are following the progress of Ethan Kadish as he continues to recover from being struck by lightning on June 29, 2013.
This is their sixth installment.
To read their earlier stories go to wcpo.com/ethan.