Vacation in Missouri & Kansas - part 1

So, nothing is ever BORING around the Wilson household, as most of you already know. The evening before we took off, mommy was sterilizing the custom trach tube ($300), while she and daddy were getting the van packed for the trip. Well, we forgot to set a timer, and voila - here's what NOT to do, ever. The obturator is completely melted, but mommy was able to salvage the trach tube, minus a few special "not hand-blown" bubbles where the tubing will attach. Another special needs first - I guess we are always blazing new trails. Maybe we should start the book on what NOT to do:-)

We made our first night in St. Louis. By the way, if you are ever in need of a hotel, DO NOT STAY at the Best Western St. Louis Inn. While the staff was super-friendly and helpful, the accommodations are lacking, to say the least. While in the bathroom, I felt a dripping on my arm... the bathroom ceiling was coming down on us! (This was after I requested someone please come clean the toilet - it was gross). So we got moved to another room, and the new bathroom had black mold on the ceiling, and black mold in the shower to match. How these people can charge a rack rate of $140 a night without a smirk on their faces while they take your money is really beyond me...

We made it to St. Joseph, MO without much trouble... but it wasn't long before the excitement began. We arrived at the Patee household to see the extended family to celebrate a joint Father's Day. But within 20 minutes, daddy went to check on parts of Braden's set-up only to find that his trach tube had come out... no alarms on the vent, no alarms on the pulse-ox - meaning that Braden can hold his own for a time being, which is the good news. The bad news is that after 4 tries, the old trach would not go in, we made the call to St. Joe paramedics, who arrived just in time for us to try the smaller trach size, and daddy got it in on the 3rd try at a funky angle - but it worked - praise God!! The paramedics were there for "moral support" and to help us get Braden at the right angle so daddy could make a good attempt at getting the trach in... we are just so thankful that our training kicked in and we knew what to do!

We spent a few calmer days in St. Joe with the Patee and Wilson grandparents, and Brad's brother Brian, his wife Jenny, and their son Carter flew in from Denver for a long weekend with us. We had dinner Father's Day evening with Wilson extended family, Monday night was treated to dinner at the local Cajun/LSU restaurant so we could watch the first of three games for the College World Series for LSU to take on TX and we won the first game. Tuesday we learned to play "The Farming Game" (circa 1979) and enjoyed family time.

Wednesday we made our way down to Wichita... mommy had to head to bed early not feeling well, and hope the Tigers would win without her cheering them on. They did win the national title - Geaux Tigers. Today mommy was slow out of the gate but feeling better, but Braden was not feeling his usual and slept pretty much all day except for a visit downstairs with more family tonight for a BBQ. Spending good time with Brad's brother Scott, his other brother Brent, his wife Bry, and son Koehn. (Ko-en) Looking forward to more time with friends and family this week... so more details are coming.

Thanks for checking in on us and our travels... seen five states so far this trip - three more to go before it's all over.

Brad, , Kodi & Braden

"New" Chair, Swimming & Daycare Daycamp

Well, it's been a frenzied but fantastic week in the Wilson household!

First, our AMAZING therapist and friend Gayla, with the help and advice of our friend Doris, Braden now has a great wheelchair! A client of hers donated it, and we were the lucky recipients!! The local provider is working with us to make all the needed adjustments, so this will be a fully functional chair that will hold his equipment AND roll right into a newer van and strap right into the van as his car chair -when we can finally afford to look for a newer one, complete with a handicap ramp.

Gayla also brought us a bath chair - which is GREAT news since the insurance company denied us for one. I know you are all surprised about that one. We cannot wait to try it!

Last weekend we took Braden into his own baby pool - he really enjoyed it, once he finally relaxed, he really got relaxed enough to fall asleep and even snore in the pool!

Braden's daycare, Kidz Korner is having daycamp, and he even gets to spend a little time with the kids in their main play area! The kids were so excited, because he normally spends the day in the baby room. And Braden took a really good nap after watching TV in the playroom and hanging out with the kids.

This week we prepare for our long trip home, we will be on the road for two weeks and two days visiting family all over Missouri and Kansas. We hope to update during our trip, if we are able.

Hope your summer is going well!
The Wilsons

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!!!!
http://www.2theadvocate.com/news/47170532.html?showAll=y&c=y

Hurricane plan involves special-needs children

Parents argue with state over shelters, hospitals



BILL FEIG
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.


STORY BY STEVEN WARD
PUBLISHED JUNE 8, 2009

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.