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Mother is stuck in health care dilemma as her baby struggles with illness

Elizabeth Koh, Miami Herald on

Published in Health & Fitness

A discharge form claimed that the hospital's social work and case management team had "worked extremely diligently" with local advocates "to arrange for a safe discharge environment. She is going to a home in Miami Beach."

What the form didn't mention was that the home is a room in a AirBnB, rented out by another Puerto Rican family who fled to the mainland before Maria hit. When the rental agreement ends on Oct. 31, Jimenez and her daughter will need to find somewhere else to live.

For now, Victoria sleeps fitfully in a queen-size bed she shares with her mother, heartbeat monitor wrapped tightly around her right foot. The ventilator, a constant companion since she arrived on the mainland, beeps on a makeshift nightstand next to her. From it, a tube half as wide as her wrist snakes up toward her throat.

Jimenez hasn't slept much either, rubbing at her red-rimmed eyes and occasionally running a hand over her hair. Every 45 minutes, Victoria's equipment beeps again, reminding her to check on her baby and make sure the ventilator is still operating as normal.

She also faces a medical crisis of her own -- without her own Medicaid, she has only about two weeks' worth of anticoagulant medicine to keep her blood disorder under control. Without it, she's at risk of an errant clot causing a fatal blockage, a heart attack or a stroke.

A spokeswoman for the Agency for Health Care Administration, which administers Medicaid, declined to comment citing patient privacy laws.

Joe DiMaggio Children's Hospital told Jimenez shortly after her daughter was discharged that Victoria's Florida Medicaid coverage kicked in, but that she can't be readmitted unless she develops another acute condition.

That means unless the infant becomes dangerously sick again, the two are still without somewhere to go at the end of the month. Advocates are trying to find somewhere new to house them, Martinez said, but their own funds are likely to cover only another week of private rental housing.

Advocates have also helped Jimenez apply for help from FEMA, though they still have not secured enough funds from the disaster response agency to house her and her baby.

"This being tossed out of hospitals and being placed in the community and making it appear she doesn't need medical assistance is wrong," Martinez said, faulting bad communication among health services and federal agencies in coordinating Victoria's care.

Jimenez's biggest fear is that without anywhere to go, Victoria might be taken from her and put in the foster care system. But Jimenez would rather take her chances in Puerto Rico, where much of the island remains without precious power, than lose custody of her daughter, she said.

"What I wanted for my daughter was to get treatment or therapy," Jimenez said, to eventually wean her daughter off the ventilator. "I've seen other folks in Puerto Rico with similar conditions, where doctors give you no hope," she added, describing some patients who remain on life support their whole lives. "They're like creatures."

She wants more for Victoria, she said: "A normal life."

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