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dreamlover31 · 7 years

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Nothing Can Tear Us Apart: Chapter 6

"Thank you for coming"

As soon as the front door closed, Alexa let out an exasperated sigh, she had spent the better part of the morning interviewing potential candidates for the role of caregiver for hers and Rafael's precious daughter Nadia. However, while each woman had impressive credentials, when it came time to interact with the infant, they were met with flailing arms and ear popping screams. After the last one's departure, Alexa had all but given up hope that she would ever find someone who could not only receive her stamp of approval, but also the finicky little one. The sound of small whimpers snapped her back to reality, within a few steps, she stood in front of the bassinet parked beside the living room couch; as she looked down upon the smiling little baby wrapped in a pink blanket, her lips stretched out into a small smile.

"What am I going to do with you my little angel?"

Nadia cooed softly as her arms stretched outward, almost pleadingly for her mother's affections, Alexa lightly scoffed then pointed a single finger in her direction, she giggled at the feel of Nadia's tiny hands grasping then pulling it close to her mouth. Suddenly, the mother/daughter bonding moment was interrupted by a knock at the door, not wanting to upset the fussy child, Alexa leaned down and gently gripped the delicate package in her hands and removed her from the bassinet; with Nadia hoisted over her shoulder, Alexa headed to the door. Upon opening, she was met at the other end by a young woman, long wavy dark hair, tanned skin, from her appearance alone the newcomer looked young enough to be in college. Alexa gave the visitor a welcoming smile while she rubbed Nadia’s back.

"Hello, are you my next appointment for the nanny position?"

The young woman nervously smiled, "Yes"

"Oh good, come on in"

Alexa motioned the petite brunette to follow her inside, when the door closed behind them, they made entry into the living room where Nadia was returned to the bassinet. Once she was safely tucked away, Alexa sat down on the couch, in the corner of her eye, she spotted the young woman standing in front of her shifting her foot back and forth as she fiddled with her fingers. Alexa observed the nervousness coming from her as an expression sympathy graced her face, she waved a hand to signal to the timid young woman that it was safe to join her, the two women faced each other once they were settled.

With her hands folded on top of her lap, Alexa began the interviewing process, "Well let's get started, shall we? Have you ever worked with children?"

"No, but I've taken care of my grandma for almost four years until she passed away recently. She was very ill...cancer"

Alexa placed a hand on her chest, "Oh my...I'm so sorry for your loss"

The young woman lightly nodded

"Well, as far as the hours goes, I work at a women's shelter and my schedule is from 9 in the morning to around 6:00 in the evening and my husband...well he usually leaves around the same time as me but he doesn't get home until almost 11:00 at night. So, you would only be needed until I arrive home from work, if that fits your schedule"

"Yes...that would be alright"

Alexa smiled softly until they were interrupted by small cries emanating from the bassinet, she motioned a finger to the interviewee to indicate that she would be right with her, for the second time today, Alexa tended to her daughter's needs. Nadia was nestled in her mother's arms and brought over to the couch, soft shushing sounds seeped out from Alexa's lips while she gently rocked her. The young woman watched with a warm smile at the act of a mother comforting her distressed infant, in that moment, Alexa's gaze flickered over to the amused potential candidate.

"i'm sorry, she gets cranky when she's not the center of attention"

The two women shared a heartfelt chuckle, then she tentatively opened her arms and asked, "Would it be alright if I hold her?"

"Sure, but I should warn you, she hasn't been exactly responsive to the other ones I've interviewed"

Carefully, she passed Nadia off to the awaiting woman, as she locked eyes with Nadia; a miracle happened, the little girl eyes lit up as she squealed in happiness and her tiny hand reached up and patted on the young woman's nose. Alexa just looked on in astonishment because after trial and error, it would appear that her daughter found the prime choice for her caregiver.

Her dark brown eyes widened, "Oh my gosh, this is mind blowing, she didn't take to any of the other candidates,but with you, she adores you"

"I guess I have something special she sees in me"

"Well, I think I've seen enough...the job is yours if you want it"

The candidate beamed a bright smile, "Thank you so much, I promise I won't let you down"

"I have faith in you" but just as she was wrapping up things, Alexa realized that she had yet to know the young woman's name.

"Oh God, I am so embarrassed...I was so caught up with everything that I forgot to get your name"

There was a long pause before she answered

"It's Ashtonja...Ashtonja Abreu"

That was when Alexa's heart dropped and the room went dead silent, Alexa's face was turned into a stunned expression as a million thoughts raced through her mind. Oh my God...it's her, the girl Rafael had been helping...but what is she doing here? Ashtonja looked worriedly at her with Nadia still cradled in her arms, cautiously, she placed her hand on top of her shoulder and timidly asked:

"Are you alright?"

Alexa blinked and lightly shook her head, "Yes, I'm fine"

Slowly, the silence filled with tension eased, then she faced Ashtonja and widely grinned, with a free hand, she interlaced her fingers with Ashtonja's.

"You know...ever since Rafael told me about you and your mother, I've always wondered about what was happening with you, if you and your grandmother were safe and at one point I thought about reaching out...but I thought that I would be intruding on your lives"

"I felt the exact same way, when that guy claiming to be a detective came to my door and asked me questions about him...it got me thinking, so I asked my grandma and she told me everything"

Alexa's grip tightened on her hand, tears began to well up in her dark brown eyes

I'm am so sorry about what happened to your mother"

"Don't be, she was never around for me...besides it gives me a little comfort knowing that for once she did the right thing"

"Ashtonja...can I give you a hug?"

She nodded, then Alexa carefully wrapped her arms around her and Nadia, she soothingly rubbed her back as tears streamed down her cheeks. After she released her from their interlocked limbs, she wiped her eyes with the edge of her palm and resumed a happy grin.

"So...I assume you are still living with your grandmother"

Ashtonja tilted her head downward slightly, "Well...since she passed away, I couldn't afford to live in her apartment so I've just been staying with friends"

The words came out of Alexa's mouth before she had a chance to process them, "We have a spare bedroom upstairs...I would love if you could come live with us"

She shrugged her shoulders a little before answering

"Oh no...you don't have to do that, I'll be fine"

Alexa shook her head, "No, I insist, besides you've made a friend" Alexa pointed her chin to the tiny baby snuggled in Ashtonja's arms.

Ashtonja lightly chuckled, then paused for a moment to consider her proposal

"Ok, I accept"

"Perfect"

Several hours passed, Rafael strolled through the front door, he placed his briefcase by the table in the foyer and threw his keys into the dish on top of it. He crossed the threshold into the kitchen where he slipped off his jacket and draped it over the chair at the counter, his emerald green eyes looked up and smiled lovingly at the sight of his wife holding a glass of scotch in her hand. Upon retrieving the small glass and downing the amber liquid in one gulp, the empty vessel was perched on top of the marble counter, at that same time, she walked over and slinked her arms around his neck; their foreheads touched while their bodies swayed a little in a state of perfect bliss.

"How was your day?"

"It was challenging to say the least, but it got better"

"Well I'm glad to hear that"

"How did the nanny interviews go?"

Alexa slowly unwind her arms and lowered them until their hands interlaced, then she firmly gripped them in the same manner as when she came to his office to announce to him of her pregnancy; and just like before, Rafael sensed the tension in her touch. His emerald eyes looked at her in concern, but then he gave Alexa a reassuring smile and said:

"Hey...I'm sure it wasn't that bad"

"Wait here"

She left his side and disappeared into the other room before he had a chance to retort, when she reemerged, Rafael felt his heart race as his eyes widened and was left completely speechless; which was a rarity for him. He was in total shock that the young woman who was dragged into Willard's web, who felt like he owed a debt to after her mother's untimely death was standing in his kitchen alongside his wife.

"Ashtonja?"

"Hello Mr. Barba"

#rafael barba #alexa duvall #nothing can tear us apart #svu fanfiction

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kansascityhappenings · 6 years

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Girl has blunt message for insurance company after brain surgery request denied

Cara Pressman sobbed in the big red chair in her living room. The 15-year-old tried to absorb the devastating news relayed by her parents: that their insurance company, Aetna, denied her for a minimally invasive brain surgery that could end the seizures that have haunted her since she was 9 years old.

“When my parents told me, I went kind of blank and started crying,” she said. “I cried for like an hour.”

Her friends had been lined up to visit her in the hospital for the surgery three days away, on Monday, October 23. Between tears, she texted them that the whole thing was off.

This 15-year-old wept as her parents told her their insurance company denied her for minimally invasive brain surgery that could end her seizures https://t.co/v7D5jFlob4 pic.twitter.com/J5OsF5X0qQ

— CNN (@CNN) December 11, 2017

https://platform.twitter.com/widgets.js

It was supposed to be a joyous weekend. Cara’s grandparents had come to town to celebrate their 90th birthdays, a jubilant party with more than 100 family and friends crowding her home. The party did go on — just with a lot more stress.

Cara had multiple complex partial seizures that weekend. When the seizures strike, her body gets cold and shakes, and she zones out for anywhere from 20 seconds to two minutes, typically still aware of her surroundings. Her seizures can be triggered by stress, by being happy, by exerting herself — almost anything. “It’s like having a nightmare but while you’re awake,” she said.

In the six weeks since the denial, Cara has had more than two dozen seizures affecting her everyday life. Her message to Aetna is blunt: “Considering they’re denying me getting surgery and stopping this thing that’s wrong with my brain, I would probably just say, ‘Screw you.’ ”

Aetna: We’re looking out for what’s best for patients

The Pressman family and, separately, Jennifer Rittereiser, a 44-year-old mom who has struggled with seizures since she was 10, approached CNN in recent weeks after they were both denied, by Aetna, for laser ablation surgery, a minimally invasive procedure in which a thin laser is used to heat and destroy lesions in the brain where the seizures are originating. Aetna is the third-largest health insurance provider in the country, providing medical coverage to 23.1 million people.

Neurologists consider laser ablation, which is performed through a small hole in the skull, to be safer and more precise than traditional brain surgery, where the top portion of the skull is removed in order for doctors to operate. The procedure is less daunting for the patient and parents who make decisions for their children: No one likes the idea of a skull opened and a chunk of brain removed.

In denying Cara her surgery, Aetna said it considers laser ablation surgery “experimental and investigational for the treatment of epilepsy because the effectiveness of this approach has not been established.”

“Clinical studies have not proven that this procedures effective for treatment of the member’s condition,” Aetna wrote in its rejection letter.

The insurance company did approve her for the more invasive and more expensive open brain surgery, called a temporal lobectomy, even though her medical team never sought approval for the procedure.

The laser surgery is approved by the Food and Drug Administration and is widely recognized within the epilepsy community as an effective treatment alternative to open brain surgery, especially when the location of seizure activity can be pinpointed to a specific part of the brain.

Dr. Jamie Van Gompel, a neurosurgeon at the Mayo Clinic, disputes Aetna’s assessment. He is not involved in Cara’s care nor Rittereiser’s treatment, but he said Aetna’s assessment is wrong.

“I would not call it experimental at all,” said Van Gompel, who is leading a clinical trial on the surgery at Mayo as part of a larger national study. “It’s definitely not an experimental procedure. There’ve been thousands of patients treated with it. It’s FDA-approved. There’s a lot of data out there to suggest it’s effective for epilepsy.”

Van Gompel said a temporal lobectomy carries a much higher risk of serious complications, including the possibility of death. “It’s a big jump to go to a big invasive procedure,” he said.

Recovery time after open brain surgery can range from six to 12 weeks. By contrast, a patient who undergoes laser ablation can be back to work or at school in less than two weeks. The pain from laser surgery is much less, and extreme headaches are fewer than with open brain surgery, Van Gompel said.

While laser ablation has not yet undergone large randomized controlled trials, Van Gompel said existing data shows it’s effective more than 50% of the time. He hopes the current clinical trial will show a success rate of 60% to 70% or better in epilepsy patients. Temporal lobectomies, he said, have a slightly better rate, of more than 70%.

Pressed by CNN for a better explanation on its denial, Aetna stood by its rejection for Cara and Rittereiser, saying it was in the best interest of the patients. But the language was softened slightly.

“Clinical effectiveness and our members’ safety are the primary criteria we use in determining whether a treatment or service is medically necessary,” Aetna said. “There is currently a limited amount of evidence-based, clinical studies related to laser ablation surgery. As noted by the Epilepsy Foundation, only studies with a very small number of participants have been used to report the effectiveness of this procedure. We consistently evaluate any new studies or additional evidence when developing our clinical policy bulletins, and will continue to do so for this procedure.”

Contacted for reaction, the Epilepsy Foundation strongly objected to Aetna’s remarks, saying the insurance company took its information out of context. Laser ablation surgery “has emerged as a new minimally invasive surgical option that is best suited for patients with symptomatic localization-related epilepsy,” said Dr. Jacqueline French, the chief science officer with the Epilepsy Foundation.

“This technology is much less invasive than the alternative, which involves removing a sizeable piece of brain, at a substantially higher monetary and personal cost,” French said. “This path should be available, if the treating epilepsy physician has recommended it, without delay or barriers.”

Phil Gattone, the president and CEO of the Epilepsy Foundation, said insurance denials and other barriers to treatment have become a common battle for thousands of Americans with seizure disorders.

Gattone knows first-hand the pain of what Cara’s parents are going through. His own son began having seizures when he was 4 and underwent brain surgery in the early 1990s. “It was extremely challenging for our family to make a decision to remove part of our child’s skull and brain for a surgery that we hoped would end the devastation of seizures that were stopping his development,” Gattone said. “We took this leap of faith and made the decision, and it worked out the best for him.”

But he added that he and his wife wished laser ablation surgery had been available back then. The device used for laser ablation surgery was approved by the FDA nine years ago. “I know that my wife and I would’ve found much more comfort if we had had (laser ablation) as an option,” he said.

Gattone said people with seizures, their caregivers and their doctors should not be “spending critical time in the midst of a health-care crisis, filing paperwork, making appeals or otherwise going through the motions of administrative paperwork” trying to get approval for a life-changing operation.

“The Epilepsy Foundation can understand no reason why an insurance company would place any barrier to delay a treatment that may save an individual’s life, promote the development of the young child’s brain or bring about seizure control,” Gattone said.

Mom who crashed with kid in car gets denied

Jennifer Rittereiser lost consciousness behind the wheel of her silver SUV while driving with her 7-year-old son, Robert, in April. Her SUV rammed into a car in front of her and struck it again before veering into oncoming traffic. Her vehicle careened down an embankment, flipped over and came to rest on its side amid a tangle of brush. She narrowly missed slamming into a guardrail and several trees.

Mom and son somehow managed to walk free unharmed.

“People were amazed,” she said. “They had a helicopter on the way, actually. I am extremely fortunate just from that sense.”

Rittereiser has battled seizures since she was 10 and has been able to function with an array of medications in the three decades since. For much of her life, she could tell when the seizures might come.

These weren’t like the seizures depicted in Hollywood movies; she wouldn’t fall to the ground and writhe. She would zone out for a spell. She could understand people and could still function but couldn’t speak back — or if she did, her words were garbled.

As an executive in the health care industry, Rittereiser has fallen asleep during meetings. When she senses a seizure coming, she rushes to the bathroom to hide until they go away. One time, she says she urinated on herself at her desk without realizing it.

Rittereiser had a crash in 2014 in which she rear-ended a car after she had a seizure. No one was hurt in that crash, but she stopped driving for more than a year. Her medications were tweaked, and her seizures were largely kept in check, until the crash this April.

She was soon evaluated by an array of doctors and recommended for laser ablation surgery. After 34 years of struggling with seizures, she thought her ordeal might finally come to an end. Surgery was set for June 16.

But in late May, Aetna denied the surgery. She fought Aetna’s decision through a lengthy appeals process. Aetna refused to budge.

“It’s just not right,” Rittereiser said.

She said she recently went to Aetna’s website to look up the company’s values. She felt nauseated. “Everything in their core values is not being shown in the way I’m being treated. They’re talking about promoting wellness and health and ‘being by your side.’ ”

She paused, contemplating the company’s “by your side” catchphrase, saying it’s “the most ridiculous thing, because they are the biggest barrier to my success and my well-being going forward.

“It drives me crazy.”

Dad: ‘You get so angry’

Julie Pressman stood near an elevator at her doctor’s office when word came that Cara’s surgery had been denied. The mom fell to the floor and wept.

She called Cara’s father, Robert. He was at the airport picking up his 90-year-old parents for their birthday party. Mom and Dad rallied for their daughter and gathered strength to break the news. That’s when Cara sat in the red chair, crying inconsolably.

“Telling Cara was horrible,” her mom said. “Horrible.”

“It’s just so frustrating for us to know there’s a solution out there — a way to fix our daughter — and some bureaucratic machine is preventing this from happening,” Robert Pressman said. “You get so angry, but you don’t know who to take it out on, because there’s no particular person that’s doing it. It’s this big bureaucracy that’s preventing this from happening.”

Julie and Robert said the most beautiful day of their lives came on August 20, 2002, when Cara popped into the world and met her 2-year-old sister, Lindsey, for the first time. “That was the day we became a family,” Julie said. “Our love for those girls is amazing. How we got this lucky is beyond us.”

But that luck has been tested. When Cara was 9, she’d complained of extreme headaches for much of the day one evening, and then in the middle of the night, she began seizing uncontrollably. The family had two black Labradors that had gone to her room and barked like crazy to alert her parents. Cara had bitten her tongue, and blood was running down her face when they got to the room.

It was a terrifying scene. She was rushed off in an ambulance and underwent a battery of tests. Mom, Dad and Cara never thought they’d still be battling seizures six years later — let alone an insurance company. She’s had seizures on the soccer field, during softball games, on stage during plays, in the classroom. Almost everywhere.

How does she envision a life without seizures?

“I don’t know,” she said. “I’ve never had a life without seizures.”

“You will. You will,” her dad told her.

“I just don’t know when,” she responded.

Mom: “It will happen, kiddo.”

Her mother calls Cara a feisty, petite powerhouse with big marble eyes and long eyelashes and a funny wit to match. She’s a naturally gifted athlete, singer and dancer, but her parents feel that her seizures have kept her from reaching her full potential.

They long for the day when the seizures are gone. The parents said they have paid $24,000 for insurance with Aetna this year. They’re determined to get Cara laser ablation surgery with or without the insurance company’s help. They will appeal Aetna’s latest rejection — but they’re not optimistic.

In preparation, they’ve begun exploring raiding their retirement funds to pay the $300,000 out of pocket. “Cara is worth every penny, but man,” her mom said. ” ‘Screw Aetna,’ indeed, to quote my kid.”

from FOX 4 Kansas City WDAF-TV | News, Weather, Sports http://fox4kc.com/2017/12/11/girl-has-blunt-message-for-insurance-company-after-brain-surgery-request-denied/

from Kansas City Happenings https://kansascityhappenings.wordpress.com/2017/12/11/girl-has-blunt-message-for-insurance-company-after-brain-surgery-request-denied/

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