Nurses found to help ailing baby

A Petaluma woman and her baby who were stuck in an Oakland hospital for a month returned home this week after finding nurses to help with round-the-clock care, at least on a temporary basis.

But Dani and Colin Caldwell still face obstacles as they seek a permanent solution for the care of 8-month-old Maura.

"On one level, we are nervous about the future," said Colin Caldwell, a teacher at Kenilworth Junior High School. "On the other, we're trying to enjoy the moment and hoping we'll be able to work it out."

Little Maura Caldwell suffers from a rare condition that prevents her from breathing enough when she is asleep. She has to be on a ventilator when she sleeps, and needs 24-hour supervision.

Because there is a shortage of nurses and Medi-Cal reimbursement rates are half the market rate, securing private-duty nurses is difficult for families like the Caldwells, medical professionals said.

After a two-month search, the Caldwells located two nurses at a Novato home care agency who were willing to help, allowing Maura to go home Tuesday for the first time since Dec. 29.

The nurses will spend four nights a week watching Maura so her parents can begin to lead a more normal life.

The Caldwells are looking for nurses to cover the rest of the week. And how to pay for their daughter's care on a long-term basis is still unresolved.

The family's health insurance provider, Kaiser Permanente, will pay for six hours of care daily for 33 days, Dani Caldwell said. Maura, however, needs to be watched over by a nurse at night for the foreseeable future, she said.

The cost for a case like Maura's is $1,500 to $2,000 a week, depending on the type of nurse involved, said Verlinda Montoya, executive director of Heart of Humanity Health Services, the Novato home care agency that is providing Maura's nurses.

When the Kaiser benefit runs out, Petaluma's Carousel Fund, a charity for families like the Caldwells, is ready to pick up some of the cost. But the fund cannot provide a permanent solution, said Arnie Cohen, the fund's president.

Maura is eligible for Medi-Cal, the state health insurance program for the poor, elderly and disabled, but Montoya's agency doesn't accept Medi-Cal patients because the reimbursement rate is half the market rate, she said.

Another complication may be Medi-Cal regulations, which require that reimbursements be paid to nursing agencies rather than directly to families and forbid those reimbursements to be supplemented, Dani Caldwell and Cohen said.

Cohen, who is coordinating offers of assistance and donations on behalf of the Caldwells, said he is looking for a legal way around the obstacles.

"The No. 1 issue is getting nurses," he said. "Once we get the nurses, we will be able to figure out compensation."

Without nurses, Maura and her mother would have to go back to Kaiser Permanente Oakland Medical Center.

For now, the Caldwells are trying to enjoy their reunified family, which includes 3-year-old Hailey, their other daughter.

Dani Caldwell, a tax attorney, said she "can't imagine" going back to work and letting someone else take care of her daughter during the day. But if she does stay home, she said the family will likely have to sell the house.

The Carousel Fund can be contacted at 762-9136 or carouselfund@comcast.net.