Monday, January 27, 2003

By SUZANNE TRAVERS

Herald News

Deya Ali wants photos of his insides. Moments before surgery to repair his pancreas last week, Deya smiled and pointed to his stomach, urging a photographer to be sure to get the gory shots of his internal organs.

It's been almost two weeks since the 15-year old Palestinian entered the Jersey Shore Medical Center in Neptune for treatment of injuries he sustained a year ago when an Israeli settler shot him as he was walking home from school.

"Hey doctor, see how they cut me last time?" Deya says. A 17-hour operation at an Israeli hospital soon after the shooting saved his life but left a swath of scar tissue down his belly, an inch wide and ten inches long. "Don't make it so big, make it little," he pleads.

"I'm going to cut you from top to bottom like a chicken," teases his surgeon, Dr. Saad A. Saad. By coincidence, as a boy growing up in Palestine, Saad went to the same elementary school Deya attended. . Later, when he operates, the first thing he does is cut the old scar away so he can leave a thinner, neater one.

All week, Deya said, he'd been "counting the minutes" until the surgery to reconnect his pancreas to his digestive tract, enabling enzymes in the pancreatic fluid to help his body break down food and absorb nutrients. Without the connection, Deya has lost nearly half his body weight and is on the road to becoming diabetic. Deya also hopes that the operation will restore control of his bladder and bowel,, so he can stop using diapers.

"I miss my old life so much," he said. "I miss the freedom of being able to get around and be independent."

He used to stop at video arcades on his way to school in the morning. Now he has Nintendo in his hospital room. Without a walker, he gets about as far as the fish in the bowl brought to his bedside by a staffer. Deya promptly named the fish Michelle after her.

He's latched onto a favorite American snack food: Pringles potato chips. He also asks for pickles and American cheese sandwiches. He gets hungry, and if just one sandwich arrives on a tray, he asks for two.

"It's weird to feel skinny. I was always looked at as a big guy, and now I'm the small guy."

That's part of the reason settlers shot him, he believes, and why Israeli soldiers rescued him - because they thought he was older. He says that when he was first admitted to Chaim Sheba Medical Center, an Israeli hospital, staff members believed he was about 25. "When my mother called, they told her they didn't have any 14-year olds-there. And an Israeli interrogation officer came to ask me about my political affiliations. When he found out I was 14, he got angry and said, 'Down with Sharon, down with Arafat.'"

In the Israeli hospital, "I didn't feel like an enemy," said Deya, who speaks Hebrew as well as Arabic and claims the shooting was totally unprovoked.

"Everyone treated me with kindness and compassion. I had the suspicion that many Jews are good people, and that was really confirmed at the hospital."

At Jersey Shore Medical Center, Deya often has an Arabic-speaking visitor by his bedside. When he doesn't, says nurse Christine Ward, "We have a translation paper." Aref Assaf, Deya's guardian, has written out words like nausea and urination in Arabic and English, so Deya can read the word and then point to its equivalent. Sometimes Deya calls Assaf and asks him to communicate something to a nurse. But when no one is around to translate, Deya said, "I try my best to use whatever English I ever learned to put two words together and communicate."

The bad news

Moments after his surgery, Deya is also communicating with Dr. Jeffrey Yuskevish.

"Hello! Hello! It's all done! Surgery's over!" yells Yuskevich, the anesthesiologist who has monitored Deya during the five-hour operation.

Deya's eyelids flutter, his eyeballs roll. His whole faces scrunches in a grimace. Tubes are running up his nose and down his throat. His stomach convulses and a nurse turns his head to the side as he vomits.

"Bane," he moans.

No one in the room speaks Arabic. But Deya is saying one of the few English words he knows. He repeats it over and over: "Pain, pain."

Dr. Saad has successfully reconnected his pancreas, inserting part of it into Deya's stomach so the fluid will drain in - and possibly saving his life. He also found a quarter-inch bullet fragement still lodged in Deya's belly, which he placed in a plastic cup for teen, who looks at it often.

The day after surgery, Deya is drowsy with morphine to ease his pain.

A young staff nurse, Brigid Koch, has been helping Deya with his catheter.

"I'd rather have a male nurse," Deya whispers to Samar Habiby, a nutritionist at the hospital who is also Palestinian. Following the surgery, Habiby and her husband have taken turns at Deya's bedside.

Twice during the day after his operation, Deya speaks with his mother, who has been waiting in Jordan all day for his calls. Deya says it makes him sad to talk with her - he knows she is holding herself together on the telephone, but will hang up and fall apart. His mother says that, as a child, Deya was a sweet, serious, responsible child, an A student who always made the honor roll. In the hospital, he's been keeping a diary to record his thoughts and experiences.

Two days later, Bassima Mustafa and Sara Mustafa (no relation), both teachers at Paterson's School 9, join the stream of visitors, driving more than an hour to see Deya while he is being measured for ultra-light carbon fiber leg braces that will help him walk again. Like many of the visitors, they read about him in the newspaper and want to do what they can to make him feel welcome.

Sara teaches bilingual Arabic-English ESL classes and brings get-well cards written by her middle school students. Deya eagerly accepts her offer to tutor him in English.

He jokes with Bassima as his legs are wrapped in plaster for the molds. John Shimkus and Sewpersaud Madho, both of Cocco Enterprises, an orthopedic and prosthetic appliance manufacturer that has agreed to cover some of the cost of the braces, cut the casts off his legs, leaving bits of plaster on Deya's limbs and bedsheets.

"Thank you, even though you messed up my bed," laughs Deya.

But in spite of his good humor, Deya has begun to wonder about his condition, and, with it, his prognosis.

"How come I still can't control my bladder?" Deya asks Dr. Saad several days after surgery. Nurses had been telling him he'd have to learn to catheterize himself. "Why do you want me to use the catheter for a long time? I thought that was just temporary after the operation."

So Dr. Saad broke the bad news: Because bullet fragments sliced nerves at the end of his spinal cord, the damage to his bladder and bowel control is likely permanent.

"But I came here, I'm going through more operations. Now you're saying... ." Deya said.

"We are all trying to help you," said Dr. Saad.

"But I thought I came here to get that fixed."

"We never promised you that," said Dr. Saad.

"I have to keep using a diaper and embarrassing myself?" Deya asked.

"It might be better in the future," said Dr. Saad. "But at least now you'll be able to have more independence. I wouldn't have brought you here if I didn't think you could improve the quality of your life."

"Deya was absolutely devastated," said Assaf. "He didn't cry, but his face grew dark and he stopped talking. When his food came later, he wouldn't eat."

Reach Suzanne Travers|at (973) 569-7167 or travers@northjersey.com.