Brandon Perrault ~ November 9, 2008 ~ Video #9

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 have involved law enforcement when Brandon was about to be returned here, 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 services and place my 14 year old daughter in foster care.

Category:

People & Blogs

Tags:

• Brandon
• Perrault
• Weedsport
• quadriplegic
• worker's
• comp
• autonomic
• dysreflexia
• Shepherd
• Center

[joeyhunter12]

I dont know the whole story but am an ER nurse, and I do not think it the responsibility of the emergency department to find home care. I do understand that your workers comp people share almost 100% of the problem. I also have a close friend who is a quad , and several years now after his injury, the family is responsible for his care. You can be taught to do catheter changes and bowel programs..this is not for RN's. I also have a son Brandon's age and do extend my appologies for your losses.

[brandonupdate]

@joeyhunter 12 You're right - you don't know the whole story or what you are talking about. It is not my responsibility or obligation to be his caregiver. If I wanted to be a nurse, I would have trained for such. The insurance company is obligated to meet his needs - so he can live independently as he did before the accident. It is a LPN and/or RN level of responsibility to cath or do a bowel management procedure, unless we engaged in private duty.

[angelo212]

What State are you in? I love the videos. Hate what your going thru.

[brandonupdate]

We are located in NY state

[szqsk8]

Welcome to the great American healthcare system. Even with insurance you are at their mercy to squeeze every last dime outta the patients. Shameful!

[ljwantstohelp]

oh, I feel so upset for you, Brandon, your entire family.YES, you are being abused by a system that claims to offer help to its adults. What a travesty, I hate to admit it, but I think they only want to "help & protect" when there is money, property to gain such as Evelyn S. being taken by APS AGAINST HER CONSENT.I recently heard of a case near Evelyn: the grson was often beating his gr.parent- police & help were requested.The gr.parent died as a result of the beatings.NOTHING was done about it