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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

"They would take the tube out, they would put the tube back in," Jimenez said in Spanish, through Martinez. "She lived in the hospital."

On the occasions she was discharged back home in Coamo with her parents, Puerto Rico Medicaid ensured that Victoria had about 16 hours a day of home health aid. Jimenez, who was an emergency medical technician until a blood clot disorder put her on disability at age 25, tended to her the rest of the time.

More medical complications required Victoria to have a breathing tube installed in her neck in April, and a doctor suggested that Jimenez and her husband Juan consider taking their baby girl to the mainland U.S., where Victoria might receive better care. But constrained by Juan's meager income as a farmer, they hadn't made plans to do so when Maria first began to spin into existence out in the Atlantic.

As the storm approached, Jimenez had only one concern: her daughter. Victoria could only breathe for 10 minutes at a time without her ventilator, and she had a lineup of other medical equipment -- a suction machine to clear the vent tubes and an oxygen concentrator -- that also required electricity.

"All I could think about was the power," Jimenez said.

The morning of the storm, as the transformer powering their public housing complex began to flicker out, Jimenez and her husband fled with Victoria, machines in hand, to a hospital clinic about three minutes from their home.

The storm eventually downed power in every other building in the neighborhood, Jimenez recalled, save the clinic's backup generator that kept the lights on.

When the clinic's generator also began to run out of fuel over the weekend, the tiny family took an ambulance 10 miles away to Hospital Metropolitano Dr. Pila in Ponce on the southern coast of the island.

It was there that Jimenez was offered a spot on an airlift out of Puerto Rico as the island's situation grew dire, according to Jose Torres, the pediatrician on call when she was admitted. In an email sent later to Memorial Regional Hospital, he wrote that Victoria's feeding tube also developed an abscess shortly before she was transported.

"Only 13 percent of the population has electricity, which is still not stable and communications are still not working," he wrote. "Hospital institutions in the south part of the Island are having a difficult time (receiving) adequate oxygen supplies, making it even more difficult for ventilator dependent patients" to get the supplies they need.

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