Patches of Fog
UPDATE: Ethan Kadish is back in the hospital. He was admitted to Cincinnati Children’s Hospital Medical Center early April 4 after abdominal x-rays showed he had a possible bowel obstruction. By the afternoon, Ethan’s doctors decided they needed to operate to clear the obstruction. His surgeons completed the procedure in about 30 minutes, and Ethan was resting comfortably Friday evening. April 4 marked nine weeks since Ethan’s last discharge from the hospital. Scott and Alexia Kadish told WCPO they’re hoping his stay will be brief this time. Go to jointeamethan.org for more details.
LOVELAND – Loveland Middle School’s auditorium buzzes with teenage chatter as eighth-graders stream in and fill row after row, from front to back.
Ethan Kadish is coming back to school, and Joanie Elfers is there from Cincinnati Children’s Hospital Medical Center to talk to students and answer their questions.
A larger-than-life photo of 13-year-old Ethan glows from the auditorium’s screen. He is smiling, but without the braces and glasses he had last school year.
Assistant principal Meghan Lawson introduces Elfers to begin the assembly.
“Nothing in Ethan’s life has been normal since June,” Elfers says. “So this is one piece that can be somewhat normal for him.”
Last June Ethan was outside playing Frisbee at a Jewish summer camp near Indianapolis when he was struck by lightning. His heart stopped, limiting the oxygen that flowed to his brain. Ethan experienced what doctors call a hypoxic brain injury.
He was in the hospital for a long time, Elfers explains. His recovery has been difficult. He can’t walk or talk. He eats through a tube in his abdomen. It’s hard to know if he understands what people say to him. But Ethan’s doctors, parents, therapists and teachers all agree he should be back at school, to be with his friends and hear their voices. They believe that might help his brain heal.
Ethan will be coming back to school a few hours a day, three days a week. He will be in the special education classroom. He laughs, and it’s OK to laugh with him. He sometimes moans or cries, she says, and his friends and teachers shouldn’t take that personally.
“Talk to him about what’s been going on this year, who’s going out with who,” Elfers says, eliciting giggles from her audience. “You can read a book to him.”
Ethan looks like the same boy from last year, but Elfers explains, “his functioning levels are a lot different.
“Treat him the way you’d want to be treated if this was something that happened to you,” she says.
Elfers finishes, and the questions start:
“Can he still remember you?” one girl asks.
“Wouldn’t he look black and charred?” a boy asks. “He got struck by lightning. Did they fix his skin?”
And the question one student is too sheepish to ask in the group:
“How long do you expect him to live?”
Progress – Ethan Style
Ethan Kadish has come a long way in the nine months since his story of being struck by lightning made headlines around the world.
He is medically stable and expected to live a long life. His skin was never burned. He is breathing on his own – without any tubes up his nose. He is eating six times a day, instead of requiring constant nutrition from a pole hooked up to his feeding tube. He can lock eyes with whoever is talking to him, making it seem like he understands at least some of what people say. He’s laughing.
“I live for that,” his mother, Alexia Kadish, said.
WCPO is following Ethan’s recovery. It has been anything but easy.
Ethan spent days in the intensive care unit and months in the hospital after his injury last June. He went home just before Thanksgiving, only to go back three days later. He went home again after a short stay, but his parents rushed him back to Cincinnati Children’s Medical Center on Dec. 4.
Something was not right.
“He was getting sicker by the hour,” his father, Scott Kadish said.
Until Ethan’s parents got to Children’s, though, they had no idea how sick he was.
From the start, Ethan’s case has been medically complicated. His brain injury robbed him of his ability to speak or communicate what he’s feeling in any clear way. Early on, he often cried out through the night, leaving his family and the two dozen doctors, nurses and therapists treating him to guess what was bothering him.
They knew he was experiencing excess gas in his stomach, to the point where they suspected it was sometimes painful. They figured out Ethan’s whole gastrointestinal tract stopped functioning normally after his injury. It took months to get his feeding tube regulated to the point that he could leave the hospital in November.
The problem in December, though, was far more serious. A CT scan produced dire results: Ethan had “free air” in his abdomen, evidence of some kind of internal perforation or tear.
“Free air to anyone in a hospital taking care of a patient – but especially to a surgeon – is an alarming term,” said Dr. Jason Frischer, Ethan’s surgeon and interim director of the Peña Colorectal Center at Cincinnati Children’s. “It takes a relatively normal situation and makes it an urgent to emergency situation.”
Frischer explained that to Ethan’s parents and recommended emergency surgery to try to find the cause of the problem.
Scott and Alexia Kadish were faced with the frightening decision: Should they consent to this emergency procedure for Ethan?
They were worried and exhausted.
Until this point, the big medical decisions had been made for them.
“I’m not in the business of playing God,” Alexia Kadish said.
The procedure required Frischer to slice into Ethan’s abdomen and examine his organs, inch by inch. The Kadishes consented.
When Frischer cut into Ethan, a rush of air flowed out of his abdomen, and Frischer and his medical team saw the contents of the boy’s intestines spilled into his abdominal cavity.
Frischer began examining Ethan’s small intestine. In less than an hour, he found a hole the size of a pencil eraser.
He removed the damaged part of the intestine and created a surgical opening so the waste from Ethan’s body would empty into a bag instead of traveling through his large intestine.
Frischer examined Ethan to look for more holes but found none. Then he and his team cleaned the waste out of Ethan’s abdomen as best they could and sewed him back up.
Dr. David Pruitt and Dr. Ashlee Goldsmith waited with the Kadishes throughout the nearly three-hour procedure. Alexia Kadish calls the two “Above and Beyond” for the extraordinary care they have given Ethan. Pruitt is Ethan’s attending physician, and Goldsmith is a pediatric rehabilitation fellow. From the time Ethan first arrived at Children’s, even when he was still in ICU, they have been talking with the Kadishes about his rehabilitation and recovery, making plans and planting seeds of hope.
“I went to a summer camp similar to Ethan’s, so I identify with him and his family,” Goldsmith said. “There was no question in my mind about where I wanted to be during his surgery.”
The surgery went well, but Frischer warned the Kadishes there were still many hurdles Ethan had to clear to recover. Those hurdles read like a checklist:
“We just hope in the end that he takes more steps forward than back,” Frischer said.
No one could tell his parents when he would go home again.
Doctors still aren’t sure what caused the hole in Ethan’s intestine.
Frischer warned there was nothing he could do to prevent a similar, life-threatening problem from happening again.
“He is so unusual that there’s no way to know,” Frischer said. “The textbook on this problem hasn’t been written yet.
"It probably never will.”
‘We Didn’t Break Him’
Ethan cleared those medical hurdles quickly. But for weeks, his temperature spiked for reasons his doctors couldn’t explain.
Finally, Ethan’s stomach started working again. He was consuming more calories. His mysterious fevers subsided. He went home again from the hospital Friday Jan. 31, eight weeks and two days after the surgery that saved his life.
Alexia Kadish explained on the Join Team Ethan Facebook page that the family’s strength was tested immediately when they had to go without their “around-the-clock” nursing care for 24 of the first 32 hours Ethan was home.
A neighbor who is a nurse helped the Kadishes through that first night with Ethan. Then Scott and Alexia “tag-teamed” throughout the day Saturday until a nurse arrived at 11 o’clock that night.
“Here are some things we learned,” Alexia Kadish wrote.
“We can do a lot more than we originally imagined; we are a more solid team than we gave ourselves credit for; and we didn’t break him!”
As excited as Scott and Alexia Kadish are to have their middle child home again, the transition has had its challenges.
Ethan's older brother, Zakary, and younger sister, Elyse, still rib Ethan "as if he's the same brother he was before," Alexia Kadish said. They spend time with him. Elyse likes to read to him.
But Zakary, a junior at Loveland High School, was initially concerned about having nursing staff – people who were essentially strangers – in the house all night. Elyse, a fifth-grader at Loveland Intermediate School, has shushed Ethan when he started crying out while she was watching TV. It's normal kid stuff, Alexia Kadish said, and that's somehow comforting.
Scott and Alexia Kadish carve out time to spend with each of their other children, whether that's watching a movie in the basement or taking Zak on college campus visits. It's been more difficult for them to find time to spend together – just the two of them – as a married couple, Alexia Kadish said.
"We have made our relationship a priority," she said. "And, for the most part, we communicate very well with each other. It's one of the things I'm most proud of through all this."
There also is the financial strain.
Scott Kadish estimates Ethan’s medical expenses already have topped $1 million. He expects out-of-pocket medical expenses to be anywhere from $150,000 to $250,000 per year. The home health care nursing staff alone costs about $150,000 per year out-of-pocket, he said.
Fundraising efforts remain critical.
“What worries me now is I don’t know for how long,” he said. “Is that for a couple of years or is that forever? How do you raise enough money for a long period of time?”
Ethan is, after all, just 13. What level of care will he need for the rest of his life? Nobody can answer that question.
The Kadishes have tried not to dwell on the financial pressures, he said, and fundraising efforts continue on many fronts. Those efforts range from last year's Home Run Derby and Eighth Night for Ethan, each of which raised between $20,000 and $30,000, to a March 19 school bake sale that raised $515.
In all, the Kadishes have raised enough through the nonprofit HelpHOPELive to fund maybe a couple of years of those out-of-pocket expenses, Scott Kadish said. Advisors have urged them and their friends to keep working, he said, because there is no telling how long Ethan's story will resonate with people enough to prompt them to contribute.
"It all helps, and it all adds up," Scott Kadish said. "There's no contribution too small, and there's no contribution too big."
The weeks at home have evolved into a “new normal” for the Kadish family.
The local support group known as “Team Ethan” still brings the family dinner three times each week.
Scott Kadish has gone back to a more typical workweek at the Procter & Gamble Co. where he’s a group manager for the company’s purchasing organization.
Zak and Elyse are focused on going to school, spending time with friends and playing sports. Soccer for Elyse; tennis for Zak.
Alexia Kadish was a part-time copy editor at The American Israelite, a Cincinnati Jewish newspaper, before Ethan’s injury.
Now her days revolve around Ethan. There are times when a friend stops by and insists that Alexia Kadish leave for an hour to take a break and grab a coffee.
But mostly she and Ethan balance doctors’ appointments and home care with therapy sessions each Tuesday and Thursday for therapy with Cincinnati Children's Outpatient Neurorehabilitation Team, or ONRT, at the Daniel Drake Center for Post-Acute Care.
The Slow Work Of Recovery
It’s Thursday, and Amber Lowe leads Ethan through occupational therapy as he sits in his wheelchair in a small room at Drake.
Ethan is in a good mood this particular day, laughing frequently and smiling broadly through most of his therapy.
Lowe smiles as she stretches his curled fingers on each hand and extends his arms one at a time.
It is slow work. The movements are small and painstaking for Ethan, whose smiles and laughter turn to groans of discomfort in an instant.
Ethan’s range of motion has improved over the week. Alexia Kadish credits an accupressurist who visited Ethan at home the previous weekend. He applied pressure to points on Ethan's body to try to open his nerve channels, she says.
Lowe is impressed. She can move Ethan’s arms much higher than ever before. She suggests other areas of focus for the accupressurist, and Alexia Kadish writes notes in her smart phone to remember it all.
All the while Lowe talks with Ethan.
“Your arm’s getting too tall for me,” Lowe says. “That was really good, though. You can take a break. That was hard.”
Lowe finishes up after an hour. Ethan’s home health nurse, Rayna Williams, dims the lights so the glare doesn’t bother Ethan when it’s time for him to lie down on the therapy mat for his next session.
Shannon Brausch and Caity Sweet come in for Ethan’s physical therapy.
Brausch shows Alexia Kadish a new collar that she’s brought for Ethan’s neck.
The device is designed to help support Ethan’s head when Brausch and Sweet lift him out of his wheelchair. Brausch puts the collar on Ethan. He doesn’t seem to mind it.
The two women move Ethan from his wheelchair to a sitting position on the edge of the mat. After a few exercises, they remove the collar and lean him against a foam wedge with a pillow on top. Sweet bends his right leg at the knee. Ethan resists and grunts a bit when she increases the pressure.
“Every once in a while, I can be stronger than Ethan,” she says.
“Do you feel a stretch through your lower back?” Brausch asks Ethan. He makes a moaning noise that sounds like an objection.
“Five more seconds, and then we’ll relax,” Sweet tells him, and then counts down.
Brausch breaks the news: “Guess what? You have two legs.”
The exercises start all over with the left leg.
“I like the way they talk to him,” Alexia Kadish says of the ONRT staff. “It’s so matter of fact and respectful. So encouraging.”
By the end of the second hour of therapy, Ethan is glowing with perspiration, and his eyelids are droopy with fatigue.
Back To School – Ethan Style
After a solid month of being home, the Kadishes began to think it was time to expand Ethan’s world beyond his bed, his wheelchair and his recliner at home, his ONRT therapy sessions and his many doctors’ appointments.
It was time for him to go back to school.
Alexia Kadish expected school to resume with in-home instruction. She couldn’t imagine her son at Loveland Middle School during class changes, with chattering teenagers filling the halls, slinging their backpacks, slamming their lockers and rushing to their next classes.
But school administrators encouraged Ethan’s return to the school, where he would have started 8th grade last fall if not for his injury.
A team from the school visited the Kadish home to develop a plan. They agreed that a bus equipped for wheelchairs would pick up Ethan and his home health care nurse at his house on Mondays, Wednesdays and Fridays and then bring them back after a few hours.
Chad Saunders, Ethan’s daytime nurse Monday through Wednesday, encouraged the Kadishes to send Ethan back to school.
“I think a big part of it was Chad’s enthusiasm,” Alexia Kadish said. “That gave me some more confidence.”
Saunders, himself a father of three, said he had seen other brain injury patients make progress when they returned to school after being hurt.
He knew school would broaden Ethan’s world, which has become far too small for a teenage boy since that terrible day last June.
“That’s not much of a life for any of us,” Saunders said.
Learning To Live In The Present
Ethan has been back in school for three weeks. Like any teen, some days go better than others.
Rachael Angel, Loveland Middle’s intervention specialist, is Ethan’s primary teacher. She has been trying to help him push a switch with his hand, identify colors and recognize days of the week and dates on the calendar.
His sister, Elyse, sometimes walks over from Loveland Intermediate School to visit him and have a snack with his class. Cooper Smellar and Ethan Missar, two seventh graders who played baseball with Ethan, often leave their classes to read to him. On some days, Ethan watches the boys intently. Other days, he nods off in his wheelchair.
Scott Kadish has been impressed with the kindness Ethan’s friends and classmates have shown his son.
“We were in touch with his baseball coach, and they’re ordering him a t-shirt for the season,” he said. “Maybe he’ll even be able to go out and listen to a ballgame.”
The Kadishes can’t plan too far in advance for Ethan.
They have learned to live in the present. To rejoice in the flashes of happiness.
Ethan’s second day at school offered those flashes.
He was dozing in his wheelchair when the bus pulled up to his driveway. As the bus door opened and Ethan blinked awake, Saunders opened an umbrella to shield him from the cold drizzle, then pushed Ethan’s wheelchair up his driveway.
Once Saunders got him inside, Ethan’s grandmother, Susi Kadish, cupped his face in her warm hands and began talking to him.
She told him how two visitors had raced out to meet the wrong bus in the freezing rain and how funny it looked.
Ethan laughed and laughed as his Nana, visiting from Seattle, talked and smiled and laughed along.
Nobody knows for sure how much of his Nana’s story Ethan understood. Nobody knows whether – or when – Ethan will be able to say himself.
For now, Ethan’s parents take comfort in the emotions he expresses, whether that’s his contagious, throaty laugh or his pouty mouth and the tears that well up in his eyes when he appears to be sad.
“I’d much rather laugh with him than cry,” Scott Kadish said. “But for him to be able to express both extremes, I’m hopeful that’s a good sign.”
Photo gallery below of Ethan Kadish's recovery over the months since his surgery Dec. 4, 2013. All photography by WCPO photojournalist Emily Maxwell.
EDITOR'S NOTE: 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 the second installment.
For more stories by Lucy May, go to www.WCPO.com/may. Follow her on Twitter @LucyMayCincy.