Monday, June 08, 2009

Making Front Page News

Here is the story from the front page of the local paper this morning!! YAY for awareness and change is coming!!!!

Hurricane plan involves special-needs children

Parents argue with state over shelters, hospitals

From left, Brad Wilson, his 3-year-old son Braden, and his wife Kodi sit in Braden’s bedroom, surrounded by the medical machines and devices that must be powered for Braden to live. The Baton Rouge couple had problems during Hurricane Gustav last year in getting help with their special-needs child.


The state Department of Health and Hospitals has implemented a new plan to address the needs of children dependent on medical technology in case of a loss of power during hurricane season, department Secretary Alan Levine said.

The new plan is a response to problems some families had during Hurricane Gustav in accessing medical help for their toddlers who use ventilators to breathe.
“I can tell you this. I have the phone number of every hospital CEO in the state in my Blackberry. I will do whatever it takes to make sure a technology-dependent child is taken care of,” Levine said.

Two Baton Rouge families had problems finding a place for their special-needs children during Gustav, leading them to lobby the state for a special medical needs shelter or a designated hospital.

Joe and Bridget Wallace had problems in August finding a place to bring their then-15-month-old son, William, in the days leading up to Gustav’s strike on Baton Rouge.

William Wallace cannot breathe without a ventilator and has gone though numerous surgeries, suffers from cerebral palsy and bronchial pulmonary disease, has a full tracheotomy, suffered brain hemorrhages and seizures, and is nourished through a feeding tube, his parents said.

Kodi and Brad Wilson, employees of LSU, said their then-2-year-old son, Braden, suffers from Leigh’s disease, a rare neurometabolic disorder that affects the central nervous system.

At the time of Gustav, Braden couldn’t survive without oxygen and air conditioning, his mother said.

In the days leading up to Gustav and right after, Kodi Wilson said, she had to resuscitate her son six times because he stopped breathing. (Parents note - it was actually SIXTEEN TIMES that we did this!!)

Four days after Gustav, Braden had to have a tracheotomy and was put on a ventilator to breathe.

Like the Wallaces, there were no special-needs shelters or hospitals that would take the Wilsons’ son before he was eventually admitted to a local hospital.

Kodi Wilson said she was so upset, she put together a petition with more than 40 signatures and wrote a letter to the state’s first lady, Supriya Jindal, asking for the state to assist all special-needs children and their families during emergencies.
Kodi Wilson said she never received a response.

Melissa Sellers, Gov. Bobby Jindal’s press secretary, said she checked with the first lady’s staff and they did not have the letter or petition.

In a written statement e-mailed to The Advocate, Sellers wrote, “DHH Secretary Alan Levine has worked to develop an improved plan for this hurricane season that will provide needed care for families with special-needs children. “Our absolute top priority during a hurricane is the safety and well-being of all Louisianians, especially those who have special health needs.”

Levine said every family with a technology-dependent child should have its own emergency plan in place in case power is lost. The Wilsons and Wallaces said their families now have generators — purchased at a cost of thousands of dollars. The Wilsons purchased their generator with the help of their church.

If a family receives assistance from a home health agency, that agency is required to have an emergency plan filed with the parish office of emergency preparedness as well as DHH, Levine said.

If those plans fail, families should call 211, Levine said. Operators
will transfer those calls directly to a state triage team of nurses,
hospital officials and home health agency workers.

The triage team will be set up at the state’s emergency operation center, the same place Levine and Gov. Jindal will be during a hurricane or other state emergency.
Once the triage team assesses the needs of the child, state officials will act, whether it’s getting certain supplies to the child or transporting the child to a hospital.

Unlike last year, Levine said, there are participating hospitals across the state that are part of this new emergency plan.

Levine said he does not want to name the hospitals before the emergency because state officials don’t want the families to all show up at one particular hospital.
“That could create a capacity problem. We want to do this in an organized manner and give the new system a chance to work,” Levine said.

Joe Wallace, a registered nurse, and Kodi Wilson said they wish the state would set up a special shelter where families could go just to “plug in” power cords to medical equipment for their children.

Levine said the state decided against a specific special-needs shelter.
“Too many things can go wrong at a shelter,” he said. “Many of the children would do better in a hospital.”

Levine also said the state is finalizing plans to work with private vendors to open pediatric day-care facilities for special-needs children. He said the plan is to have those facilities open by the start of next hurricane season.
But it may be too late for the Wilson family.

After what they went through last year, Kodi Wilson said, her family will probably leave Louisiana at some point.

“We don’t have other family here. We’re from Kansas. We just felt alone. We are not asking for a handout, just some help,” Kodi Wilson said.

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