Chapters: A Justin Book Story
By Kristy Tamashiro
“Can you imagine a life being trapped in your own body,” Naomi asked me.
I shook my head no as I pondered about life with the inability to speak, walk or eat on my own.
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I sat at Justin’s bedside of his conjoined room on the second floor at Leahi Hospital with his mom Naomi Book. Groans and conversations were emerging from the other side of the partition from his elder roommate. The sound of monitors beeping, fluids dripping from tubes and nurses chatting flooded the dim room.
Under the noise was a sense of silence. Naomi sat and glanced at her son as he stared into the distance.
This is Justin’s world now.
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Introduction
“You know Justin was an athletic, adventurous and handsome 28-year-old,” Naomi said while she pulled the blanket over Justin as he laid there. “He made pretty good money for someone his age, he worked as a marine machinist at Pearl Harbor. He rode his silver Suzuki motorcycle and went out to bars with friends,” she pointed to pictures hanging on the wall.
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“He was a gym rat and often times spent more hours at the gym than at home,” she chuckled.
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“He was just starting to make all the right decisions at that time, saving up money for a new place, talking about settling down and finding the right girl,” Naomi rested her hand on his shoulder.
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Those things quickly turned into the least of Justin’s worries.
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On March 25, 2012 Justin suffered a hemorrhagic stroke or severe bleeding in the brain and his world abruptly turned upside down.
Chapter One
“You know it was just a regular night at our house, but in the middle of the night I heard strange moaning from his room so I went to check on him,” Naomi recalls.
She found Justin getting up to go to the bathroom and
holding his head.
“I didn’t think anything really serious was wrong at that
moment,” Naomi said.
Justin stumbled back to his room as Naomi followed
him. He couldn’t hold himself up and she saw
him stumbling.
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“Mom, what’s going on, what’s wrong with my head,”
asked Justin in confusion. “Hold on son, sit down,
we’re going to call 911,” Naomi reassured Justin.
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Little did Naomi know, that night would be the beginning of many new chapters in Justin’s life.
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The ambulance rushed Justin to Kaiser Permanente Medical Center. Naomi and her husband Stan Book waited outside in the hallway and watched doctors running in and out of Justin’s room.
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“At that moment I knew something serious was going on,” Naomi said.
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About an hour later, the brain surgeon Doctor Daniel Donovan confronted Naomi and Stan.
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“We are going to have to do an emergency procedure and cut Justin’s skull open to stop the bleeding and put pressure on the brain,” said Donovan.
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“We had to think on the fly, there was no time to sit around and think so we just agreed with the surgeon,” Naomi said.
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Justin was diagnosed with a right temporal intracranial hemorrhage. He had surgery on the right frontotemporal craniotomy.
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“If I could do it over again, I would ask the doctor if there were any other options, I would ask if that were your child what would you do?,” Naomi said as she replayed the moment in her head.
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Naomi and Stan waited and waited in the cold Kaiser waiting area. Donovan walked toward them after the surgery was over.
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“ Justin is in serious condition,” the Doctor muttered.
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An hour later, Donovan and his team decided to perform a second procedure. Justin received surgery on his right anterior temporal lobectomy. The procedure included taking out a part of Justin’s skull and would remain absent for three months.
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Post-surgery, Justin was in a three-week coma.
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“You just go numb,” Naomi recalled as she sat and looked at Justin. “It was like you’re whole world is caving in.”
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Justin was bandaged up, not responding and appearing to be in pain
based on his vital signs. In the second week of Justin’s coma, Naomi needed a sign.
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“I told him I know you can hear me, don’t be afraid you’re in the hospital and the doctors are doing everything to get you better, but if you are tired of fighting and in a lot of pain, go to grandma if you see her, we will be okay, don’t stay for us,” Naomi recalls whispering to Justin. “But if you decide to stay it’s going to be a long road ahead and mom and dad will be with you every step of the way.”
An example of a hemorrhaghic stroke
Chapter Two
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This past legislative session in Hawaii, patients were close to being able to determine just how long that road ahead would be. Senate Bill 1129 or “Death with Dignity” would’ve allowed terminally ill patients the right to choose how long they want to fight.
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The measure would’ve allowed qualified patients in Hawaii to receive medication to end their life legally.
The bill was sponsored by Senator Karl Rhoads and introduced on January 25 and passed three readings.
Hundreds of residents testified on February 15, the bill’s first public hearing before the Senate Consumer Protection and Health Committee.
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Cheryl Toyofuku a registered nurse and former oncology certified nurse testified based on her experiences at a major Honolulu medical center.
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“Dignity is not found in taking away hope in life, it’s not found in a handful of lethal pills,” Toyofuku said.
John Radcliffe a lobbyist of 41 years suffering from cancer also testified.
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“This is all about relief,” Radcliffe said. “Life ending relief. This is about, if not vanquish death, at least cheat them out of a little pain at the end.”
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“If Justin was in constant pain and struggling to stay alive, I would consider it,” Naomi said.
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The bill received support in the Senate in a 22-to-3 vote after hours of testimony from both opposing and supporting lawmakers.
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On March 23, 2017 the bill was deferred at the Legislature.
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“Sometimes I think when you administer something to take a person's life it’s the easy way out for the person making the decision,” Naomi said. “I think it’s different if you pull the plug and let the person go on their own, but to actually give the okay to someone to give medicine to take a life, it makes it easier on the family and that’s probably how I would feel if I did it, and would live with some guilt.”
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However, the measure doesn’t fit a patient profile with Justin’s current circumstances.
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Senate Bill 1129 states that a patient with a terminal disease meaning an “incurable and irreversible disease that will cause death within in six months and is confirmed by two physicians.”
No one can make the decision to die for someone else.
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“You have to be mentally competent to make the request and physically able to take the drugs yourself,” Senator Karl Rhoads said. “Normal laws of murder and manslaughter would apply if someone else tried to force someone to take a life ending prescription.”
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The Health Committee turned down the measure. House Health Committee chair Della Au Bellati informed a packed conference room and explained that the committee didn’t see enough details on how to balance the right to choose death and boundaries to protect vulnerable people.
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“How about you, what would you do if it was your child,” Naomi asked me.
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I sat there, somewhat speechless. I thought to myself, this is something I can’t simply answer. I glanced at Justin and thought about all the stories Naomi had shared with me about the progress he’s made through the last five years. I thought about those discouraging and hopeful times through Justin’s health journey and saw him lying there on the hospital bed knowing he’s making progress. “I really don’t know,” I answered back.
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“Justin chose to live and here we are.” Naomi said.
Chapter Three
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Justin was hospitalized at Kaiser
Permanente from March to September 2012
in the intensive care unit.
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Family and friends would flood the waiting
room area every single night. They would
eat dinner, play cards and talk story all
night long.
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“I felt so bad when family would come to
visit, I was a walking zombie, I had no
appetite,” said Naomi. “Sometimes you just
have to let it all out don’t try to bottle it in
and snap out of it.”
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After some time, the Book’s family turned
the tragic time into an opportunity to
support one another.
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“We became one big family with other families in the waiting room,” Naomi smiled. “Our family is huge,” Naomi giggled as she stretched her arms out wide “so we ended up bringing dinner for this one family from Waianae every night.”
Chapter Four
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Justin was admitted to long term care at Leahi Hospital in September 2012 and has been a resident for the past five years.
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“He still thinks he’s 28-years-old, even though he’s 33 now,” said Naomi. “Come on Justin show how old you are,” as Naomi held his hand. Justin laid there with his fingers fiddling slowly. “Come on Justin you got it,” Naomi smiled. Justin flashed a two then four and four with his fingers. “See, he still thinks he’s 28,” Naomi laughed. “Come on Jus, you 33 now.”
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Justin is currently in a encephalopathy state. He’s aware of his surroundings and situation but he’s unable to communicate his needs.
Justin can tell what time of day it
is too by looking at the sunlight
out of the window.
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“In the last five years, I’ve shown
up late to Leahi Hospital about
five times,” said Naomi with her
arms crossed. “Everytime I come
late Justin is mad and I know this
because he won’t even look over
at me or nod at me when I
walk in,” Naomi laughed.
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“When I asked him to throw a
shaka and peace sign he can,”
Karen Klemme a rehabilitation
nurse said. “But he’s not able to
take care of himself and his
ability to communicate is
extremely limited. He can only
do simple commands using his
left arm, his right arm has been
significantly affected by the
hemorrhage stroke.”
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Justin is also receiving seizure
medication through a feeding tube
and has mild spasticity or muscle twitches and had a baclofen pump placed in his back to infuse medicine. He also has strong contractions that he can’t control, otherwise known as tone. In 2015, the hockey puck shaped machine was removed from Justin’s hip after he vomited and aspirated giving him lemonia.
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However, Justin at the age of 33 doesn’t fall under the typical long-term care patient profile. According to the Overview of Long-Term Care in Hawaii Final Report in 2011, the age range between 25 and 65-year-olds that need long-term care was 5,097 which is almost 11 percent less than the elder population.
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According to the “Long-Term Care Reform in Hawaii: Report of the Hawaii Long-Term Care Commission,” although long-term care affects people of all ages, the Commission focuses on long-term care for older people.
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Naomi and Stan were offered two options when they were searching for long-term care agencies.
“When we were looking around at facilities when this first happened we were referred to two facilities, Leahi Hospital or Kulana Malama,” Naomi said.
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Leahi Hospital’s residents are majority older patients and is geared toward geriatric care. Kulana Malama is for children with complex medical conditions but the agency was willing to accept Justin.
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There are 47 nursing homes in Hawaii, but none are specifically for younger patients that are in Justin’s demographic according to Veronica Mitchell, Hawaii Department of Health Medicare Certification Officer.
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The elderly population in Hawaii is projected to drastically increase by 2030. The population aged 65 and older in Hawaii is estimated to increase to 326,957 making up 23 percent of Hawaii’s overall population. Also, the population aged 85 and older in Hawaii is projected to rise to 48, 254 making up 3 percent of the state’s overall population.
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The drastic growth in
the older population
will lead to an
increase in the
number of people
needing long-term
care.
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However, according to Irene Thomas an Admission and Discharge Planner and Social Service Assistant at Puuwai O Makaha, many facilities are seeing both younger and elder patients nowadays. She said that Puuwai O Makaha, Ann Pearl Care Home Inc. and Ka Punawai Ola are examples of welcoming younger long-term care patients. She added strictly seeing elder patients is basically nonexistent.
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Although long-term care facilities are seeing both younger and older patients filter through, certain treatment are missing to tailor towards younger patients.
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“I researched and looked around and hired a physical therapist for Justin on my own to come and do exercises with him,” Stan said. Sergio Florian owner and operator of Wellness Physical Therapy comes to Leahi Hospital multiple times a week and does range of motion exercises with Justin and practices balancing at his bedside sitting on the hospital bed. He also get him out of bed and into a four wheeled walker device once a week.
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There may be care home options in Hawaii, but patients in Justin’s state need specific treatments.
Patients at care homes receive care from nursing aids, who are not certified by law to administer specialized nursing acts, they are only allowed to perform personal care and provide basic care for patients. Other duties a nursing aid may be in charge of is transporting patients or clean treatment areas.
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Justin needs vigilant nursing care from registered nurses or RNs because of his high risk of aspiration according to Klemme. RNs must monitor his tube feedings which can’t legally be done by a nurses aid.
“He also has difficulty expressing pain,” Klemme said. “He manifests his pain through tachycardia, or a increased heart rate to equal the pain being felt.”
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Justin’s nurses filter in his medication through a feeding
tube in his stomach or known as gastrostomy.
Justin also needs supervised bronchodilator treatment
which is a breathing treatment to open up lung tissue to
get rid of mucus.
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With the demand of long-term care soon to be on the rise
with a growing population in Hawaii, Justin’s space in a
facility isn’t jeopardized.
Klemme stated that a patient's medical needs qualify the
priority of care they need over their age.
Chapter Five
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Justin is slowly making progress.
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“He will need care for rest of his life,” Klemme said.
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Justin needs a feeding tube because he lacks the ability to properly swallow. He also requires incompetence and total care.
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Naomi placed a red ball with a ring on it on Justin pointer finger. “Justin spin the ball around, come on do it,” Naomi encouraged Justin. The ball laid there and Justin slowly started twirling the ball around his finger. It then went faster and faster. “Yay! Great job Jus,” smiled Naomi.
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I noticed a huge Baltimore Ravens flag hanging behind the hospital room door. I asked Naomi why. “Justin is the biggest Baltimore Ravens fan and the first year Justin got injured, the Ravens won the Super Bowl,” Naomi chuckled.
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His hospital room is decorated with pictures of family and friends and positive quotes to keep him going.
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Justin receives his meals from a bag that gets fed through a tracheotomy hole in his throat. He takes a shower twice a week with the assistance of nurses.
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Naomi cuts his hair once in awhile and it takes two days to do so because he is laying down.
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“We play cards together, but Justin likes to cheat,” Naomi chuckled.
Chapter Six
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Justin keeps fighting everyday with the help of his mom, dad and family by his side. This chapter in Justin’s book is still being written daily.
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“You know you always hear of those people that are in comas for months or don’t talk for years and one day they can remember and talk again,” Naomi said. “We are hoping for that kind of miracle.”
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