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The Honolulu Advertiser
Posted on: Tuesday, October 20, 2009

Helping hospitalized kids


By Zenaida Serrano
Advertiser Staff Writer

Hawaii news photo - The Honolulu Advertiser

Kaikua Kokubun, 5, a kidney patient, and his mother, Rendell Neizman, play video games at the Kapiolani Medical Center. Rendell says it's "like an up and down battle".

Photos by JEFF WIDENER | The Honolulu Advertiser

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Hawaii news photo - The Honolulu Advertiser

Neizman copes with Kaikua's kidney condition by focusing, as much as possible, on "the now," making every day count.

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TIPS FOR PARENTS OF HOSPITALIZED ...

Babies:

• Find out as much as you can about your baby's specific medical condition.

• Keep your own records.

• Find out what types of support services are available to you while your baby is in the hospital.

• Play an active role in your baby's care, but don't put superhuman demands on yourself.

• Accept any and all offers of help — and if you're not getting enough offers, ask for help.

Children:

• Plan activities where children can show their feelings, such as reading books together, making art, playing with puppets and writing.

• Find time to talk about stressful events and everyday events.

• Teach deep breathing. Ask children to close their eyes and think about a quiet or happy place.

• Hold your child's hand during tests and procedures, and distract your child with stories and pictures. Give frequent hugs and praise.

Teens:

• Be honest. The more your teen knows what to expect, the more comfortable he or she will be.

• Help your teen participate in decision-making by planning in advance how to cope with pain and stressful procedures.

• Gently ask questions to learn what your teen thinks and believes, and share your thoughts, feelings and reactions.

• Help your teen stay connected with old friends, as well as make new friends. Ask the medical staff to help you introduce your teen to others on the floor with similar experiences.

Sources: Kapi'olani Medical Center for Women & Children; National Child Traumatic Stress Network

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Hawaii news photo - The Honolulu Advertiser

Parents: How do you help your kids cope with illness and hospital stays? Share your experiences at www.hawaii.momslikeme.com.

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Hawaii news photo - The Honolulu Advertiser

Kaikua Kokubun, 5, and his mother, Randell Neizman, got to meet Olympic gold medalist Bryan Clay at the hospital.

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Dressed in a little hospital gown with shorts and slippers, 5-year-old Kekamakai "Kaikua" Kokubun spent a recent morning making frequent trips between his bathroom and a nearby play room — all the while in good spirits despite his condition.

In March, doctors diagnosed Kaikua with childhood nephrotic syndrome, symptoms that may be a sign of kidney problems. Since then, he has been hospitalized three times, most recently last week at Kapiolani Medical Center for Women & Children.

"There's a lot of frustration, definitely, because it's like an up and down battle," said Kaikua's mom, Randell Neizman, 31, a mental health technician from Mountain View on the Big Island.

Neizman joins countless other parents throughout the country coping with hospitalized children. An estimated 6.5 million children, from newborns to 17-year-olds, nationwide stayed in a hospital for various reasons in 2006, the most recent numbers available from the U.S. Department of Health and Human Services and the Agency for Healthcare Research and Quality.

The in-hospital experience is often one of anxiety and uncertainty for the entire family, but experts say there are ways parents can make a hospital stay easier for themselves and their children.

STAY FOCUSED

"Whether it's an infant in a NICU (neonatal intensive care unit) or a younger child or (teen), you have to take a developmental perspective and a family perspective because you all go through it together," said Bart Pillen, a clinical psychologist at Kapiolani.

It's important for parents to be educated about their children's condition, but they shouldn't become so engrossed in their children's status and treatment that "their life is eclipsed by all of the medical minutiae and issues," Pillen said.

Just focus on being a parent, he said.

"Your best monitor is your bond," he said. "Your baby needs to hear your voice, feel your touch. Read books to them. Be present."

Being present and in "the now" has been one of the ways Neizman is coping with her son's hospitalization.

"I just take (it) one step at a time," she said.

While Neizman has a lot to worry about — Kaikua's condition, hospital-related expenses and being away from her younger son, nearly 2, and the boys' father, Devin Kokubun — she refuses to let the situation get the best of her.

"I really don't allow myself to get overwhelmed and stressed out," she said. "I can't because he'll pick up on it."

Children only do as well as their parents, Pillen noted.

"You have to take care of yourself," he said. "This experience, you won't forget it, so it's much more about how you choose to remember it."

FINDING COMFORT

Kyra Furukawa, 5, suffers from juvenile dermatomyositis, a rare auto-immune disorder. Before being diagnosed, Kyra was hospitalized at Kapiolani twice during the summer — for a total of about two weeks — as she underwent numerous and often painful tests.

"I had to remain strong for Kyra," said her mother, Tracy Furukawa, a dental hygienist. "If I fall apart, what good would that do for Kyra?"

Furukawa and her husband, Alan, both 38 and from Makakilo, helped Kyra through her hospitalization by providing comforts, such as giving her her favorite blanket, and companionship — allowing visits from her preschool classmates and teachers, among others.

They were also mindful not to neglect their older daughter, Sierra, 9, during the experience. "We would buy her something special just to let her know that we didn't forget her, that we still love her," Furukawa said.

Lara Bellini and Darrett Schoeppner of Wailuku found comfort in talking with other families in Kapiolani's NICU, where their son Chance — a preemie born April 21 when Bellini was just 25 weeks pregnant — was hospitalized for four months.

"We bonded with a lot of people," said Bellini, 38, an aesthetician.

Chance is now a healthy baby who's nearly 6 months old, and the couple continues to share their story with others, most recently as guest speakers at Kapiolani's Newborn Special Care Reunion, last weekend at the Bishop Museum.

Meanwhile, Neizman continues to live in the moment and hope for the best for Kaikua.

"I can't look too far ahead and I can't think about what happened in the past," Neizman said as Kaikua kept busy in the hospital's play room. "I have to just focus on what's going on now."