Wishbook: Blind, paralyzed toddler needs new bed and carseat

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The third time Alejandro Quesada nearly died he had yet to reach his first birthday.

As South Miami hospital announced an emergency code blue, the newborn went into cardiac arrest — his heart, zero palpitations; his family, frantically praying.

“Everything was a blur, in slow motion. Dozens of people were rushing all around me. Right before his heart stopped, a priest was in the room baptizing my son,” said Alejandro’s mother, Lizzette Jimenez. “It was clear that he was about to be gone, but by a miracle, they resuscitated him, and he is still with us.”

Months before going into cardiac arrest in 2012, Alejandro nearly died twice before, his mother said. This time, the baby’s heart halted after oxygen stopped flowing to his brain.

“And yet again, he was resuscitated; brought back to life,” Jimenez said. “Total of three times. He must have a purpose.”

 

Alejandro — now 5 years old — was born prematurely at 26 weeks alongside his twin brother, Adrian. Adrian recovered after months in the neonatal intensive care unit. But because Alejandro’s amniotic sac didn’t have enough fluid, he lives with disabilities including cortical visual impairment, bilateral retinopathy of prematurity, brain atrophy and optic atrophy that will last throughout his life.

How to help: Wish Book is trying to help this family and hundreds of others in need this year. To donate, pay securely at MiamiHerald.com/wishbook.

“Even though my son is paralyzed, eats through a feeding tube, can’t walk or talk or see, he’s very much in some ways like a normal 5-year-old,” his mother said, caressing her son’s cheek. “He loves to cuddle and loves to be engaged.”

Her glossy eyes locked on his soft smile.

On most days, doctors say you can find the tiny boy listening and smiling to his favorite type of music — instrumental symphonies by Mozart.

His family and team of around-the-clock nurses and therapists say the soothing sounds evidently bring him joy. They say they measure his emotions by his oxygen tank readings.

“There is no doubt that he likes to be around his family,” said Juan Napoles, Alejando’s respiratory therapist. “When he’s happy, his oxygen numbers rise and turn green; his eyes light up. When he’s uncomfortable or upset, he’ll begin to crunch his nose and his vitals begin to dip. At that point the numbers turn red.”

Napoles is just one of several rotating medical staffers who attend Alejandro 24 hours a day, seven days a week.

Working alongside him is Raphael Martinez, a registered nurse who spends up to 12 hours at a time with little Alejandro — and his brother, of course.

“You can’t have one without the other; they’re inseparable. Adrian knows his brother is sick, so he does his best to take care of him, play with him and treat him like anyone else,” Martinez said, writing down his daily vital signs report.

A few feet away was Adrian, who hopped on a box and proceeded to climb into his twin’s narrow crib. He grabbed a nearby stethoscope and placed it on his brother’s chest.

“I love you!” he yelled into his brother’s ear. He grabbed a stuffed animal and placed it on his brother’s belly and gently planted a kiss on his cheek.

Alejandro, unable to interact, continued to sleep. Still, his vital signs shifted — into the green digits.

While Alejandro has a crib, it’s quickly becoming too small and difficult to position him adequately for rest, his nurses say. His medical team says a new bed is among items critical to Alejandro’s progress.

“The insurance doesn’t cover a medical grade bed, something that will adjust as he gets older. It also doesn’t cover pediatric chairs or a car seat. Because Alejandro has to be specially seated, it’s becoming more and more dangerous to transport him in a normal car seat that’s not tailored to his condition,” Jimenez said.

A pediatric chair would allow Alejandro to be seated on the floor for more proactive therapy. A car seat would sit him at an angle, instead of upright, and not interfere with his feeding tube.

Jimenez, an ultrasound technician at Aventura Hospital, had to cut down from working full-time hours to less than 20 a week after the twins were born. That has put a crimp in the family’s ability to afford specialized equipment.


04WBQUESDA_CPJ

 

Alejandro Quesada, a 5-year-old old twin boy with a diagnosis of cortical visual impairment, bilateral retinopathy of prematurity, brain atrophy and optic atrophy, is attended by his mother, Lizzette Jimenez, on Thursday, Dec. 21, 2017. Alejandro is in need of a new medical bed, a special car chair, and other items.

CARL JUSTE cjuste@miamiherald.com

 

Still, the family keeps up its spirit. Near Alejandro’s bedside is a sign: “World’s bravest patient.” On Sundays, the twins’ father, Jose Quesada, likes to buy chocolate dessert as a special treat for the boys.

“Since Alejandro’s brother enjoys most of the treat, and Alejandro is unable to eat due to his G-Tube, I like to take a tiny bit of the chocolate mousse from the top of the dessert and place it on his lip or tongue,” Jimenez said.

She demonstrated with a tiny remnant from a chocolate fig bar. Seconds later, Alejandro stirred.

As the sugar penetrated his tongue, a smile swept across his face. Said his mother: “It lets me include him in the special moment too.”

HOW TO HELP

Wish Book is trying to help hundreds of families in need this year. To donate, pay securely at MiamiHerald.com/wishbook. For information, call 305-376-2906 or email wishbook@miamiherald.com. (The most requested items are laptops and tablets for school, furniture, and accessible vans.) Read more at MiamiHerald.com/wishbook.