Where hope, tragedy and home intertwine:
Hospital unit may have to shut
Ventura County Star
By Tom Kisken
May 28, 2011
St. John's under seismic mandate might get a 2-year extension
The sunroof was open.
Troy Banks was driving home to Santa Maria after coaching a youth football game in Fillmore. A gust sent the game plans on his passenger seat airborne. When the 21-year-old former running back reached for the papers, the car swerved. It flipped at freeway speed. Banks' neck broke, leaving him unable to speak or move anything but his head and his shoulders.
Now, 26 years after the accident, Banks lies on a bed at St. John's Pleasant Valley Hospital in Camarillo, spelling out his thoughts by nodding as a nurse recites the alphabet, letter by letter. He lives with a 68-year-old racquetball player who woke up a year ago and couldn't move, a woman who thinks of what life would be like without muscular dystrophy and 28 others in a long-term care unit where tragedy, hope and home intertwine.
Though it's the only hospital ward of its kind in Ventura County, the subacute care center for patients on ventilators and feeding tubes was set to close in December, at least temporarily. Pushed by state mandates to meet changing seismic requirements by 2015, hospital leaders said they had no choice but to shutter the unit and move patients, possibly to nursing homes, maybe to facilities outside the county.
Now there's new hope. Legislation signed into law in April means hospitals that meet certain safety standards may have up to seven years longer to finish construction projects. St. John's officials say there are no guarantees and more government approvals are still needed. But they're confident they'll qualify for a two-year extension, pushing the temporary closure of the subacute unit back to the end of 2012.
Whether or not the extension happens, hospital officials are working to get state approval to allow the unit to move to Pleasant Valley's sister hospital, St. John's Regional Medical Center in Oxnard, said John Bibby, CEO of the Camarillo hospital. That means patients, nurses and other staff members would stay together, minimizing changes in care.
After two-plus years of construction, the Camarillo building currently used for subacute patients would be transformed into a traditional hospital. Banks and other subacute patients would return to the Pleasant Valley campus in the building that now houses the acute care hospital.
"It's not a given. We have to find donors and funds to meet subacute standards," said Bibby, expressing conviction the plans will come together.
"Those residents have lived there for a long time," he said. "We think the right place for them to be is St. John's."
The news has triggered cautious optimism in some patients and blunt skepticism in others who say they'll believe in the plan when it happens. There's one consensus: Permanent closure would be an eviction from a place that is their universe.
"I know it's a hospital but I don't see it like that. I see it as a home," said Joben Bagarinao, who has Duchenne muscular dystrophy and has been in a wheelchair since the age of 11. He has lived at the subacute unit for about five years and believes, like many others here, his dependence on a machine to help him breathe and his needs for care means this will be his last residence.
"I'd like to go home. There's just no way," he said, later explaining why he and other patients asked for a chance to tell their stories. "We just want to keep this place open. We want the patients and the staff to be together."
In the bachelor pad
Bagarinao lives at the end of a hall in a room decorated in the purple and gold of the Los Angeles Lakers. Next to bobblehead basketball players and the huge poster of Kobe Bryant, there are photos of his mother, Perla Ritchie, who died two years ago.
That passing is when Bagarinao knew he couldn't live at his home in Oxnard again. There would be no one who could take care of him 24 hours a day.
But this room is not a sad place. One patch of wall showcases photos of the day eight years ago when he was taken to a Lakers practice to meet Bryant, Shaquille O'Neal and a dizzying list of other players. Not far from that is a Sports Illustrated swimsuit calendar showing a model in full bikini glory. A photo of a stretching Megan Fox is on display too.
"I like to keep this like a bachelor pad," said Bagarinao, whose knack for making friends has earned him a nickname: "The Ambassador."
He's an identical twin. His brother, Joper Bagarinao, was born with the same disease. He died nine years ago after a friend took the brothers to a Lakers game. On the trip back, on the Pacific Coast Highway, Joper stopped breathing.
It's something Bagarinao thinks about often, just before he goes to bed. But he understands his disease affects children and whittles away at life expectancy so that many people die in their late teens or early 20s. On June 25, he turns 32.
"Being here and being on the ventilator has prolonged my life. I'm in a better place," he said, trying to explain how he's come to terms with his condition. "I look forward to each day. I just live day to day."
Coming to terms is a big thing here. The people crippled in accidents think about the moment their lives changed forever because of a drunken driver, a gust of wind or a swan dive into a pool that only looked deep.
Lisa Richey lives in a room decorated with pictures of dolphins, soda cans and sayings like "Jesus loves you but I'm his favorite." A confirmed junk-food addict, she wants people to know about the care she gets at the center.
"This is the best place," she said. "They treat me with respect and kindness and they have a good heart."
Sometimes she thinks of what life would be like if she didn't have muscular dystrophy and wasn't leashed to a ventilator, a hospital bed and a wheelchair. She thinks about a lot of things.
"I want people to know that even though I'm in this wheelchair and I look different, it doesn't mean I don't have feelings," she said, later confiding she also thinks of mortality.
"I think about what it would be like on the other side," she said. "Maybe there would be more happiness and more love."
Other patients look at the unit as a stopping point, not an end.
"People call this place their home," said Paul Murillo, who came here about three years ago after he was shot four times while driving down an Oxnard alley. "I call it a boot camp. You come in as someone else. You come out different."
Murillo was a tagger who got involved with gangs and has gone through turbulent times at the unit, including incidents about four years ago that led to his mother being convicted of making threats and for abuse related to interfering with the unit's care for her son.
Now 23, Murillo defends his mother and says she didn't commit any abuse. Though dependent on a wheelchair and a ventilator, he works as what he calls a youth church director, traveling to congregations and other groups to tell his story to people on the same path he once followed. He also delivers his testimony online.
"I don't regret being shot," he said. "I changed a lot. It taught me to mature more and to see things differently."
He plans on taking online community college classes. His biggest goal is to leave the unit, move to Texas to be with his brother and enter a physical rehabilitation center.
"You can't give up," he said. "You have to go forward and keep going day to day."
'Who my friends are'
In the room next to Murillo's, Tony Lazos lay bundled in a Super Bowl blanket. The 68-year-old San Diego man with an MBA from Harvard has launched several health care companies, including a firm that uses nutrients to fight Alzheimer's.
A year and two weeks ago, he was training for a national racquetball tournament. The next morning, he woke up and couldn't move the right side of his body. Eventually, he couldn't move the left side either.
He was diagnosed with Guillain-Barre Syndrome and blames his condition on undercooked chicken in a Caesar salad. Once paralyzed from the neck down, Lazos can now shimmy his neck and chest. His goal is to keep the trend going. "I'm driven to get out of here," he said.
Lazos looks at his time in the unit as a learning experience. He's learned about being totally dependent on others. He focuses on the strength of relationships and the difference between the people who visit or call and those who don't.
"I've learned," he said, "who my friends are."
Rumors of the center's closing triggered an earthquake of what Lazos calls fear tremors. Patients worried about being sent to a place too far away for family to visit. Those who have shuttled from one facility to another agonized about being sent to facilities that struggle with bed sores or cleanliness or compassion. They say the Camarillo unit faces none of those issues.
"I think this is the best place for me," said Richey, who has been in seven other facilities. "I love being here."
Many of the patients still worry the hospital's plans could change again with at least one patient predicting it. Others want guarantees.
"It's not in writing," said Cary Brand, who is here because he was hit while driving to the store for hot dog buns by an uninsured, unlicensed driver. "I don't trust it. I have nowhere to go."
As Brand talked, his breathing machine issued a shrill series of beeps, a sign the exertion of talking was consuming too much energy. The 48-year-old man who once worked in nuclear medicine grew used to the noise long ago.
"We were talking about starting a band," he said, "called the Ventilators."
But while some patients are wary, others accept the hospital assurances that they're home will be saved as gospel.
"If I didn't believe it, I wouldn't be here," said Richey.
The door to Troy Banks' room is decorated with a huge 49ers helmet. He can't talk but finds ways to communicate. Ask him about last year's Super Bowl and the Green Bay Packers and he rolls his eyes. Ask him if he watches the television show "Glee" and he does the same thing.
When Banks came here five years ago, he devised his own system of communicating, sorting the alphabet into five different rows so he could spell out what he wanted to say.
Ask him about the rumors that the center might close. "Row 1? Row 2?" asked a nursing administrator as Banks spelled his answer:
Ask him how the news of an extension made him feel. He doesn't need the chart. Toss out the word, "happy," and his head bobs up and down.
His mother, Jerry Banks, said she knows the unit won't close.
"I already prayed on it," she said. "I knew something was going to happen. I just didn't feel we would be pushed out with nowhere to go."
She's 69, a former corrections officer who lives in Santa Maria. Every week, she drives two hours to see her son, spends the day with him and returns home.
Her goal is that one day her son won't need the ventilator. Then, she said, he'll come home and she'll take care of him.
"His room is pretty much the way he left it: 49ers drapes, a big (football) blanket on the wall. The TV is in the same place. The bed is in the same place," she said. "I feel like if I move it, it's no longer his room."
Ask Banks about his care at the unit and he spelled out "safe" and "excellent." Ask him where he wants to be and he waits for an "h," an "o," an "m" and an "e."
Then he smiled.