Monroe Township boy, 10, sees a string of successes after lung disease diagnosis


 Carly Q. Romalino/Gloucester County Times


MONROE TWP. — The last six months for Randy Ramos can be summed up by a two-foot long strand of beads.

The red spheres mark every blood transfusion the 10-year-old has received since he was diagnosed with pulmonary hypertension early this year.

The black bones represents each one of the Monroe Township boy’s shots since being admitted to the Children’s Hospital of Philadelphia in January.

And the big blue glass fish — that’s one bead Randy, and his mother Monique Mayes-Roulhac, 30, wish had never made it to the strand.

“I didn’t want it,” said Randy, who, instead, was after a quarter-sized yellow swirled glass bead that would signify the day he was discharged from the Philadelphia-based hospital.

The blue fish marked the day CHOP doctors broke the news to Randy and his parents that the then-third-grader could need a lung transplant.

“I never thought I would get surgery,” Randy said Friday from his Williamstown home — five months after the shocking news was delivered.


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Randy Ramos, 10, of Monroe Township, received a bead for everything he went through while at The Children's Hospital of Philadelphia. Randy needed a lung transplant after being diagnosed with pulmonary hypertension. Six months later, Randy has been deactivated from transplant list and is doing well.  


When the Times first met Randy in February, he was in a hospital bed, depending on oxygen. The image was a shock to his Whitehall Elementary School classmates who last saw him as a presumably healthy kid, who loved to write, wanted to be a scientist to study birds, and had a great big smile.

Randy had already been hospitalized for about three weeks when the school organized a “Rally for Randy” in mid-February to raise money, and spirits, for the third grader and his family. Randy was too sick to attend.

The school community, and other outside donors, managed to raise about $6,800 for the family that covered bills while Mayes-Roulhac was out of work to be at Randy’s bedside.

“It showed me that this is how a community comes together,” said Mayes-Roulhac. “It meant a lot. I didn’t expect that type of turn out.”


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Whitehall Elementary School student Randy Ramos, was 9 years old when he was diagnosed with pulmonary hypertension in January. From his hospital bed at The Children's Hospital of Philadelphia he recorded a video message to his Whitehall classmates in February that was played during a fund-raising rally to generate donations to send to Randy's family.

After months of overnight hospital stays, close calls and the looming fear — and relief — that a lung transplant could happen at any time, Randy was cleared by the hospital to return to school to finish out the school year with his third grade class. He was discharged from the hospital on March 15, the day before Randy’s 10th birthday.

He finally added that big yellow bead to his collection of medical memories.

Plus, Randy was deactivated from the transplant list. He headed back to school in April to a loud reunion with his classmates who were full of questions about what he had been through.

“We went outside to play, and I was crowded,” Randy said. “One of my friends said, ‘did you get it (transplant) yet?’ And I said I didn’t get it at all.”

From his hospital bed at CHOP, Randy recorded a video message to the school that was played during the rally. He promised to answer all of his friends’ questions about what he had been through.

“I said I got sick and I felt really tired and couldn’t breathe,” Randy said. “They asked about my feeding tube, and where it goes.”

The Whitehall elementary schoolers also asked about his red and black back pack that he wears everywhere.

“I was on medicine in the hospital, and this is the same stuff, but it’s not on a pole, its in a book bag that I have to wear all the time,” Randy recalled explaining to his classmates.

In addition to the oxygen tank the 10-year-old is hooked up to at night when he sleeps, he has a Broviac port in his chest over his heart. The pump in his red back pack continuously delivers a steady stream of medicine to his heart. Since his lungs have been affected by the disease, his heart has to work harder. The medications keeps it from beating too fast.

“That little bit (of medication) has him out of the hospital and back in school,” Mayes-Roulhac said.



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Randy Ramos, 10, of Monroe, stands in his bedroom. Randy needed a lung transplant after being diagnosed with pulmonary hypertension. Six months later, Randy is off the transplant list and doing well.

Although Randy is set to start the fourth grade at Whitehall Elementary School in the fall, his life isn’t completely back to normal.

His battle with the rare lung disease didn’t end when he walked out of CHOP.

“He says he feels better than he’s every felt before,” Mayes-Roulhac said. “There’s no cure for pulmonary hypertension, so he still has it.”

Randy and his mom now have a new routine every day. She changes his Broviac port dressings and makes sure Randy is eating all of the calories and nutrients he needs for the day since the feeding tube didn’t agree with his stomach.

Every 48 hours, Mayes-Roulhac, a postpartum patient care technician for Virtua, has to replace his pump and mix a new batch of heart medicine, which she estimated would cost about $1,000 a month if the family did not have health insurance.

“I do get emotional when I mix it,” she said. “It’s hard to see your child with a line in his chest ... but his life depends on it.”



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Monique Mayes-Roulhac changes the pump with a new batch of medicine on her son Randy Ramos, 10, of Monroe Township. Medicine is pumped to his heart to slow the beating. Randy needed a lung transplant after being diagnosed with pulmonary hypertension. Six months later, Randy is off the transplant list and doing well.

When Randy left CHOP, he went home with a back pack full of medicine, and a slew of physical limitations that he’d never had before.

On hot summer days, he can’t play outside, and the pump in his back pack — which can never be disconnected — can’t get wet.

“Swimming, that’s one thing he’s really had a tough time with,” said Mayes-Roulhac.

In August, Randy will join other children who attended CHOP for transplant surgeries or pulmonary hypertension treatment for a week-long camp in Maryland. The camp, where the kids with pumps can swim under doctor supervision, is run by CHOP.

“He hasn’t been two feet away from me since he’s been home from the hospital .. it’s going to be an interesting week, for sure,” Mayes-Roulhac said.

Randy couldn’t stop smiling Friday, when he talked about camp. He’ll be tip-toeing into the water to splash around, then after fishing he wants to go bird watching, he said.

Randy’s sure there is a bead for that, too.

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Early in the year, Whitehall Elementary School in Monroe Township started a fundraiser to help third grader Randy Ramos, who needed a lung transplant after being diagnosed with pulmonary hypertension. The school, and other outside sources, raised about $6,800 for the family to cover expenses while Randy's mother Monique Mayes-Roulhac was out of work. Six months later, Randy is off the transplant list and doing well.



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