Condemned to Die: Ask me how. Tell me why.

Condemned to Die is DONE barring more changes from the editorial department. I sent in all the photos to be included. That was difficult...choosing which pictures to add. I want people to see how well she responded to therapies. I wish there had been a way to add more but the publisher limits the numbers of photos.

I wish there had been a way to include all the changes I saw over those 16 months of her fight for recovery. Perhaps through the blog, I can tell "the rest of the story".

It is heart breaking what happens to patients suffering from a brain injury. It is bad enough to be in one for any reason. But a patient with a brain injury has no one to speak for them. They are frequently the last to receive care. They are more frequently the first to be medicated. They are more frequently shuffled from one facility to another, just like a box going down a conveyor belt.

Brenna only had one way to communicate. She had a loud noise I called her "baby elephant" sound. The only time she made that sound was when she was uncomfortable or needed to be changed. Too often facilities gave her Valium instead of doing their job of keeping her clean. THAT is how she got sore. I bought Desitin for her and I had a battle getting everyone to use it. They preferred to use their own stuff that was nothing more than petroleum jelly with a few additives...nothing healing. They didn't always clean her well, then wondered why she got sore.

I put up signs on the wall: Desitin Always. Some staff chose to ignore and do things their way, ways that caused Brenna to get sores in her perineal area. Who in their right minds would want to be sore in their privates? Yet, they do it to patients. There were times when I felt like any nurse who refused to take care of Brenna right should have their own rears sandpapered and just use petroleum jelly on them...whenever I felt like cleaning them at all.

One day I got sick of Brenna being ignored. The facilities wouldn't let me take care of her. I went to the Dir of Nursing and told her that if she allowed a particular nurse to be near Brenna again, I would file charges and prosecute. In the last nursing home, I called the Dir of Nursing and told him to keep one of his aides away from Brenna. She was lazy, never doing a good job of cleaning, and when I asked her to change Brenna, she fluffed me off with excuses and told me Brenna would have to wait. She had spent the previous hour and a half sitting in their little office chatting. That was when I called the DoN and told him to get down there ASAP. Did they get rid of her? No. They reassigned her. I heard other aides complaining about her laziness but their concerns were ignored, too. Lazy too often keeps jobs in nursing homes. I have seen it over and over and over.

Once I got Brenna off of the institutional conveyor belt and at home for 8 days before her SCA, I never heard the sound again.

I had placed her bed in the family room where I could see her from the kitchen or living room. Even from the bathroon, I was just a few steps away. For the first time in months, I could relax. So could she. She smiled a lot during those 8 days. She was home, a familiar place, with her dogs, her stuff, and her mom.

Her bodily functions leveled out. She got the proper amount of water. (One facility cut her down on water intake, causing her feet and ankles to swell. The doctor was not a specialist in anything. He barely spoke good English. He determined that the fluid in her formula was enough. It wasn't. While there, her lips cracked and her skin became very dry.) All the lotions and chap sticks in the world won't compensate for the body's need for water.

I was most proud of her BG levels. For months facilities used the wrong protocol for her. They ignored my constant concerns about the bouncing BGs from a low of 38 to a high of 547.  Once I got her home and on her old protocol, her counts leveled out to normal ranges. I was so proud of her. I told her how wonderful she was doing.

Facilities were willingly blind to her brittle diabetes. Nursing homes are no place for a brittle diabetic. I don't believe they know what they are doing with Type I diabetes. Any patient is lucky to survive their diabetic care. Nursing homes are certainly no place for America's 200,000 young people, where they cannot interact with people their own ages or have doctors that are NOT geriatric doctors.

Brenna was a brittle diabetic since she was 6 years old. I learned early that while I was not a diabetic expert, I must be an expert in HER diabetes. Yet, no one listened to me as long as she was shuffled from one facility to another.

People tell me to contact a lawyer. Been there, done that. They say her case is too complicated.