Brandon Update

Brandon progresses again 3/17/09

2009-03-28T08:27:00.008-04:00

It was a long winter full of much defeat and digression.

We visited him on 3/17/09 at the acute rehab facility he has been in since March 6, 2009, Northwoods in Cortland, NY. Brandon is using a standard walker, with his leg brace and the assistance of therapists.

November 30, 2008 Update / Less than Triumphant return to NYS

2008-11-30T17:30:00.004-05:00

It's been 3 months since a video has been posted regarding Brandon's progress and recovery. Brandon came home 8.1.08 with 24 hour nursing care. The nursing agency walked out with 48 hours notice on 9.24.08 after a nurse practioner screwed up the order of care (changed it to 8 hours a day, (4 hrs, 2 x's a day) without ever seeing Brandon. Even though there were more current orders for 24 hour care by his actual physician, comp chose to only honor the NP's. A comp hearing was requested, the 24 hours were put back into place, but a nursing agency couldn't be found. We settled for aides for a while, who could not do the catheter or bowel management care. The aide agency walked out on 11.15.08 again with 48 hours notice. I contacted the NYS Dept. of Health an filed a formal complaint. Both times this happened, his 24 hour care landed in my lap. I'm not a nurse, never was trained, never wanted to be trained, and have 2 other kids in addition to Brandon, who also need me. I've missed weeks of time at work which I am no longer paid for, and this is truly a nightmare. There is no one to help him get ready for any appointments as most of the time, I go to work and leave him alone. He isn't able to get to PT or OT, to urology appointments, or any appointments without someone getting him ready. He can't even prepare a meal on his own. There is no transportation available for him because comp won't provide anything that isn't for a medical appointment. Even then he is not allowed to call the transportation company on his own. A couple of times Ethan has just picked him up and placed him in my van; just to get him out of the house. We have spent alot of out of pocket money for catheters when he had three UTI episodes with autonomic dysreflexia, and had 3 emergency room visits. Comp won't reimburse for those ($500) because they are claiming Brandon used catheters for other than medicinal purposes when he was at the Shepherd Center. Comp also is giving us a very hard time about reimbursing for the private care we paid for over the course of five weeks, that was when we could afford to do that, temporarily. Brandon's comp attorney told me only to keep copies of the checks we paid them, as it turns out comp wants w-9's and copies of their licenses. Two of the nurses we hired we let go - having come home from work one day to find one LPN doing all of her personal laundry here at my house. Within a week my dryer broke and I had to buy a new one. We have done nothing but lose money (over $2,000 to date), and live day-to-day struggling to meet bare minimum care for Brandon. For whatever reason I fail to understand, his care landed on my shoulders just because I'm here. The last agency called Brandon's primary physician, actually lying to him and saying that they left Brandon in the care of his mother, when they walked out. I was not even home when they left. I have called adult protective services, county nurses, anyone I can possibly call. There does not appear to be any way out of this nightmare. Brandon is couped up at our house, his health deteriorating, he is between kidney stone surgeries, wearing an indwelling foley catheter that he shouldn't have to be wearing only because there is no one to assist him with self straight-cathing through the 24 hour day. It is impossible for me to shower him every day as that, with his bowel program, is no less than a 3 hour task. By the time I pick his sister up from school at 6:00 pm, I just don't have the engery left.

The system has completely failed him, and us. I am expected to perform the tasks of a registered nurse and nobody seems to be listening to me - I don't want to do this, I can't do this, and Brandon doesn't want me to do it. This problem really belongs in the lap of worker's comp. I involved law enforcement when Brandon was about to be returned here on an ambulance from an emergency room visit. I presented the three physician orders for 24 hour skilled nursing care, and showed them that care was not present in this home. It was not safe for him to be here. They left him here anyway. When I asked adult protective services to open a case on me, I'm an adult and I'm being abused by the system, they offered to open a case with child protective and place my 14 year old daughter in foster care. Thanks, but no thanks.

August 1, 2008 BRANDON RETURNS TODAY!

2008-08-01T06:45:00.000-04:00

Brandon Perrault - The Final Journey @ Shepherd Center 7.15.08

2008-07-23T19:40:00.004-04:00

1st set of weights: 35 lbs each hand
2nd set of weights: 45 lbs each hand
3rd set of weights: 50 lbs each hand

Brandon was discharged 7/15/08 from the Shepherd Center. Still has many goals to reach - much OT and PT to be done. This video is Brandon working indepdently from Shepherd Center staff in the weightraining room. He has been doing this several weeks usually with his Uncle Jamie. Look - it's our favorite nurse, Althea!!

Brandon walks 250 steps at Shepherd Center 7.11.08

2008-07-14T22:18:00.005-04:00

Brandon walked well over 250 steps on 7.11.08 during his Neuro Recovery Network Program at the Shepherd Center, Atlanta, Georgia. These were unassisted steps! My sister Sharon took the video and can be heard in the background encouraging him. The music is all by Smashing Pumpkins, this was Brandon's request. Please sit back, take ten minutes, and enjoy the wonders of taking these awesome unassisted steps. Unfortunately, Brandon's time at the Shepherd Center is coming to an end. Shepherd Center is an awesome place for anyone to rehabilitate and actually get back on their feet - possibly walking!! Put your faith in them - they can do it.

23 STEPS May ~ 2008

2008-05-09T06:34:00.004-04:00

Simply put - Brandon took twenty-three (23) steps yesterday, with a walker!
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April 23, 2008

2008-04-23T06:24:00.003-04:00

GREAT NEWS! Brandon is starting to move his left toe and have feeling in the left foot/tendents. He has been accepted into the Neuro Recovery Network program through the Shepherd Center and his stay in Atlanta has been extended. (We were expecting him home on 4/18/08). The NRN program is sponsored by the Christopher and Dana Reeve Foundation. Shepherd Ceenter is only one of seven facilities in the country offering this intensive locomotor program. The goal: walking again. My parents are on their way back to NY - left yesterday with some minor glitches with the rig, but they're en route.

Shepherd Center Recovery Update 4/08

2008-04-06T16:13:00.002-04:00

Grandma and grandma took these pictures and most of the video footage. They're at the Shepherd Center six days a week - supporting Brandon in every way they can. On the 7th day, they have been going to Aunt Sharon's house in Snellville with him. Today they're all at the Atlanta Aquarium. Stay tuned for those photos! 4/6/08

OUR VISIT TO ATLANTA

2008-03-12T05:46:00.013-04:00

We flew to Shepherd Center in Atlanta, GA to see Brandon 3/6/08 - 3/10/08. On Friday, 3/7, he was discharged from the Shepherd Center hospital and moved into a Shepherd Center apartment where he will live with 24 nurse-care and attend their Day Program from 9 am to 4 pm. Jocelyn, Ethan and I toured the Day Program gym and there are three pieces of equipment in particular Brandon is longing to use. All locomotor treadmills. We actually saw a young man with the robotic braces attached to his legs walking the treadmill while we were there, with assistance from therapists who moved one leg, then the other leg, for him. Brandon's spirits are good. He will need to board the Shepherd bus each morning at 8 am in order to get to his program. When I rode the bus home with him the first day, there were seven people in wheelchairs all chained and harnessed in, going to the same 12-unit apartment building. Brandon is responsible for his own food while he's there and we are exploring the MARTA which has a bus that will pick up individuals such as Brandon for $3.50 and take them where they need to go as long as the perimeters are within the bus line. Brandon will need this service because his apartment is on a very steep and long hill. The manual wheelchair he is in now to help him develop strength would be very dangerous on this hill. Ethan, Jocey and I went up the hill to the grocery store and we lost our cart coming down it. Not good. I was very impressed with Brandon's appearance and mobility. He is very limber and at first glance, you wouldn't realize he is a quadriplegic. It is not until you watch him eat or do fine motor activities with his hands that this is apparent. Although, he has regained thumb and finger movement in his right hand and the middle finger is also trying to come back; has slight movement. On Sunday we all took my sister Sharon's mini van and went to her house in Snellville. We transferred Brandon with the transfer board which would have been challenging if there wasn't so much manpower there. Brandon did a great job and this is where his regained strength is also apparent. Once there, we transferred him again into her salon chair where he got "the treatment". Brandon even used the Nintendo Wii, awkwardly, and bowled. His autonomic dysreflexia appears better managed. Precautions are taken to prevent him from dysreflexing at the key-times he is known to have this happen, and it appears to, for the most part, help.

Partial showing of slide-video for 2.9.08 Benefit

2008-01-30T09:33:00.005-05:00

Perrault Family thanks You !

On behalf of the Brandon Perrault Benefit of February 9, we’d like to thank all the family, friends, contributors, sponsors and attendees for their kind support in making the fund-raiser a success.

To the Ukrainian National Club for the use of their facility and staff; the many volunteers who assisted: Jim Wiers, Sharon, JoAnne and Mike O’Connor, Lynne and Bernie Loperfido, Marybeth and Ed Galka, Anne Kott, Jeanette Peterson, Cindy Stephenson, Liz and Kim Marshall, Courtney Colella, Ron Dahlberg, Abbie Nuber, Carol Hamilton and her father Jim, Marilyn Wiers, Jean and Todd Roof, Joyce Brunet, Kathy Lawler for laboring over the preparation of the ziti dinner with Michael and Ella Lawler and Patti Rose; to Archie and Tina Kell and Norman Wightman for video taping – and to those who hung around to clean up including Corey Brunet and Emily Heath, and so many more ~ thank you.

To Jim Brunet and his daughter Nicole for providing us with music and sound, as well as to special guest Joe Whiting, we thank you. To Art Wenzel for directing us on this endeavor.

To all the businesses and friends who donated items for the auction including: Home Depot, BassPro, Bonnie Castle, New York Giants, Watkins International Motor Speedway, New York Mets, Underground Ink, New York Jets, Buffalo Bills, Miami Dolphins, Year Of The Dragon, Inn @ The Finger Lakes, Dr. Frank, Uncle Sam 1000 Island Boat Tours, Holiday Inns, Owasco Beverage, Mustad, and so many more ~ thank you.

To our food vendors who contributed: Mr. Pizza, Johnston Paper Company, Mark’s Pizzeria, Ed & Jean’s IGA Port Byron, Coffee Host, Daddabbo’s, SYSCO, Lewis’ Restaurant, JB’s Wall Street Cafe, Pizza Hut, Wegmans, Kosta’s, Downtown Deli, Cameron’s Bakery, Kinney Drugs, Auburn Family Restaurant, Mario’s Pizza in Elbridge, Bryne Dairy in Elbridge, Weedsport Pit Stop, BJ’s Wholesale, Peter’s Pizzeria Weedsport, and New York Pizzeria Weedsport, and so many more ~ thank you.

To those who have sent and are continuing to send donations to the Brandon Perrault Fund, PO Box 902, Weedsport, NY 13166 ~ thank you. Please continue to pray for Brandon as he recovers, rehabilitates and safely returns home. Please continue to check in with the blog site for updates: http://brandonupdate.blogspot.com/

November 2010 update: A very special 'thank you' to my employer who, after 30 years of steady employment and dedication, and my two family medical leaves to care for my sons, laid me off.

Dawn Perrault & Family

Shepherd Center, January 21, 2008

2008-01-23T06:00:00.004-05:00

Brandon came home from University Hospital on 12/21/07, and seven days later we were rushing him to the hospital. He was experiencing autonomic dysreflexia and the origin could not be found. He remained in Syracuse until his transfer to Shepherd Center, Atlanta, GA. Shepherd Center is ranked one of the top 10 catostrophic hospital and rehabilitation centers in the country for the spine and brain. They are one of only 7 facilities in the nation who offer the NeuroRecovery Network, in conjunction with the Christopher Reeve Foundation. The Locomotor Training that NRN centers are now deploying is the result of research that CDRF began supporting decades ago. This program, currently working with individuals who have incomplete cervical and thoracic injuries, involves suspending patients in harnesses over treadmills while therapists move their legs to simulate walking.

On Monday, 1/21/08, Brandon was transferred to Atlanta, via critical care medflight. After little progress here, we made the decision to transfer him to help get the AD under control and enable him to move on with his rehabilitation.

His pilot, Jimmer, had everything under control. My sister Sharon flew up from GA to accompany Brandon on the flight down.

Brandon has recently been accepted into the Day Treatment Program at the Shepherd Center, where he will live in a Shepherd Center off site apartment, with a 24 hour caregiver. His program is 9-4 daily. His goal is to complete the locomotor training program but it will take alot of work on his part; building his upper body strength first and being able to tolerate an upright position for 20 minutes without a drop in his blood pressure. He is otherwise a perfect candidate for the program. Stay tuned!(2/26/08 update).

Posted in "The Citizen" 12.31.07

2008-01-07T05:44:00.000-05:00

Family's turmoil inspires support from community
By Jennifer Hogan / Special to The Citizen
Sunday, December 30, 2007 9:05 AM EST

ELBRIDGE — When Dawn Perrault got word that her son, Brandon Perrault, was tragically injured on the job, the distraught mother never dreamed that her younger son, Ethan Perrault, would suffer similar injuries just two months later.

On September 19, Brandon, 21, was working for a local roofing company when he fell from a 40-foot extension ladder, crushing his spine. His injuries were so severe he is now a quadriplegic and requires 24-hour nursing care.

Just two months later, almost to the day, on Nov. 20, Ethan 17, suffered a fractured spine and severe head trauma from a car accident that he was involved in.

“We wanted to do what we could to help,” said Judy Nuber, of Weedsport, during a benefit for the family at the Elbridge Fire Department Saturday evening. “Ethan and my own son, Bobby, have been best friends for a long time.”

Nuber, along with her son, Bobby Nuber, and brother, Rollin Mincher, put the benefit together to help the family in making their home wheelchair accessible.

The funds will also help the family to purchase a wheelchair-accessible vehicle.

Dawn said that Brandon had initially been in a hospital in Pennsylvania, making it hard for the family to visit him on a regular basis.

“The day that he was transferred to Syracuse we were going to go and see him,” Dawn said. “But then I got the call that Ethan had been in a car accident.”

The brothers have a younger sister, Jocelyn Perrault, 13, who, according to Dawn, has been a pillar of strength for the family.

“When I was at Ethan’s accident I was just about to lose it,” she said. “But then I looked over and saw her and she kept me grounded.”

Dawn said that it is unknown at this point how severe the results of Brandon’s accident will be.

“His neuro-surgeon said that it will be about two years before we will be able to tell,” she said.

Ethan is recovering well but has suffered short-term memory loss, according to his mother.

“I'm told that it could be a year before we know if the short-term memory loss will be lifelong,” she said.

2007-11-13T05:38:00.002-05:00

Wednesday, September 19, 2007

2007-11-08T05:36:00.002-05:00

I received word around 4:30 pm that Brandon fell off a ladder at work - over 25 feet - my heart sank when the next thing that I was told was that he was being airlifted to a hospital, but they didn't know which hospital. He was somewhere in the Ithaca area at the time of his fall. My boyfriend Jim arrived around this time. It was my birthday ~ we were going to take advantage of a beautiful day and barbeque "garbage chicken". Suddenly time stood still as we waited for a call back from the medivac pilot for word on which hospital he was being taken to. We almost drove to Ithaca, we thought about driving towards Syracuse..... but the caller told me they were taking Brandon to a trauma center in Johnson City (just outside Binghamton). Jim told me to bring a jacket and some clothes, good idea. Ethan arrived home while we were waiting to hear where Brandon was being flown to. My next thought was, "what about Jocelyn? she's at field hockey practice." I called my parents, told them what was going on, and they said they'd pick up Jocelyn. Jim and I left, leaving Ethan home - I'm sorry, Ethan, that it happened that way - it was such hysteria, and I couldn't think.

We drove the 2 hours to the hospital, getting mildly lost a couple times, and the hospital called me while we were on route. They needed to do surgery and wondered how far away from the hospital we were. I asked what Brandon's injuries were, and I was told "spine". As soon as we arrived at the hospital, Jim dropped me off at the emergency entrance and I ran in. Brandon was right there, on a stretcher, they were just taking him to the OR. The attendants told me to come with them. Brandon was talking....... thank god........ I had immediate relief that his head and mind were okay. He looked like he'd been beaten up. At the OR, there was some concern about Brandon's heart rate which was beating irregularly - they called in a cardiologist. In the meantime, the neurosurgeon took me to another room and reviewed the injury and xrays with me. Brandon had crushed c-5, and broken c-6 in his vertibra. The doctor said the surgery he was doing was to repair c-6 and remove c-5. I later found out that he actually rebuilt c-5 with mesh and pieces of Brandon's bone fragments. A long wait while we got the go ahead on his heart, but Brandon was finally off to surgery. It took about 2 hours for this procedure and around 2:00 a.m., Brandon was resting in ICU, surgery was over, and we went and saw him. He was heavily sedated and did not even know we were there. Jim and I were going to go to the waiting room but when we walked in, it was dark, no lights, wall-to-wall people and not an empty chair anywhere. We left to find a motel, although I could have slept on a floor anywhere, it didn't matter to me.

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