Normal?

Families who face a crisis with a loved one who suffers a brain injury have to contend with medical professionals who continually fluff off family observations as if they were nothing.

Who knows and understands the patient? Who knows every little nuance of the patient's personality? Not medical professionals who see only brief glimpses of the patient! Not medical professionals who know that if they acknowledge the little things families see that their work is going to get harder! Not medical professionals who may have years before served a one-month round on the neurology floor of the hosptial! Not medical professionals who haven't trained on any level to be a brain injury rehabilitation specialist! Certainly not medical professionals who base their ill-informed decisions on out-of-date studies!

Who best knows the patient? FAMILY.

Family observations trump medical professionals every time.
Or it should.

BTW: When it comes to brain rehabilitation, there haven't been any new peer-reviewed, published studies in the last 25 years. Insurance companies can't find them to make their policies on treatment. If insurance companies can't find them with all their money, then how can we, the family  members find them.

Questions for the Day

Questions for the day regarding brain injuries

Why are families not informed about the availability of Therapeutic Hypothermia to decrease swelling in the brain and prevent further damage?

Why are patients not transferred to the nearest hospital where Therapeutic Hypothermia is available?

When does ending life become murder?

When signing papers to let a patient die, what percentage of brain damage crosses the line between letting go and committing murder?

Why do life insurance companies pay on policies when a patient is not determined to be brain dead?

When does pushing families to end life become conspiracy to commit murder?

Why do hospitals not give families of patients with an acquired brain injury (ABI) fully informed information about resources in the community for brain injury rehabilitation?

Why are families not informed by hospital staff about the existence of brain injury certified case manager to help families make decisions regarding rehabilitation and recovery?

When does dumping patients into sub-standard nursing homes against family wishes become kidnapping?

When does forcing non-custodial family members to sign financial papers for admittance in nursing homes, when the patient was dumped there by uncaring hospitals, become extortion?

Why do brain injury rehabilitation hospitals gain millions of federal dollars each year have the right to deny ABIs rehabilitation based on some hidden quota of 35%?

When does withholding rehabilitation for patients with an acquired brain injury become morally reprehensible enough to society to demand change?

Is this it?

As I was writing the final chapter in Brenna's book, the one of her last moments on this earth, I couldn't help but think, "Is this all I have to do, Lord? Can I come home now?"

Then I felt a gentle touch on my knee. Gibbs, Brenna's little Min-Pin,  placed his little foot on my knee with his face pressed close to me. He looked at me as if to say, "Grammie, Little Mommie left you to me. You can't go now."

I know the book cannot be the end. God still has a plan for Brenna's message.

Jeremiah 29: 11

This is one of Brenna's favorite Bible verses and was on one of her favorite sweat shirts. This verse was also one of the verses in our daily devotions on January 1, 2011.

Jeremiah 29:11

11 For I know the plans I have for you,” says the LORD. “They are plans for good and not for disaster, to give you a future and a hope.

As I was cleaning out a box, sorting, packing, and tossing, I found these notes, dated January 1, 2011.

These thoughts are my reflections on prayer and how Christians, me included, have approached prayer in our daily lives. If you use these thoughts, please remember where you read them.

*****

"Thy will be done" has true meaning when we have a personal investment in the outcome.

Too many times Christians pray, but not only put God in the box, they sit on the box so he cannot get out of the box to do His will.

What do Christians do best?    Pray
What do Christians do least?   Act on prayers as God's hands and feet.

Pray believing in God's ability to perform miracles.
Pray expecting God's blessing.

"Thy will be done"  has true meaning when we let God out of the box and stop telling him how to fix problems.

Miracles happen when Christians

let God out of the box.

Idaho Senate Bill 1348

Idaho Senate Bill 1348

I just spoke to Idaho State Senator Nuxoll. For anyone in Idaho, please encourage your state senators to support this bill. This is a first step. It is vital. 

For those who do not live in Idaho, please check your states to see if a similar bill exists.

Thank you.

Senator Sheryl Nuxoll of Idaho State Senate has sponsored a bill that would require physicians and nurses to give a patient treatment at the family's request even if the patient is dying. I called her office and left a message for her. Her bill is important but it is only the tip of the ice berg.

From my observation, many of the staff members in hospitals do not have the qualifications to determine if the patient is near death. They "assume". When Brenna was first diagnosed with an anoxic brain injury, there were no peer reviewed published studies on brain injury rehabilitation and hadn't been for 25 years. That doesn't come from just my observations. Blue Cross of Idaho, when I stumbled onto their site for criteria for brain injury rehabilitation, couldn't find any studies in 25 years either. The lack of current studies seriously affects the treatment patients with an anoxic brain injury receives.

From my observation about Brenna's treatment when she had her initial brain injury, the first hospital did not have the advanced equipment needed to protect her brain from further damage and that would restore her cognitive levels. I didn't know something more COULD be done until I found an online brain injury support group much later. I didn't know the right equipment existed to help Brenna more.

But, that hospital had to have known. Shame on them! Four miles away, in the other hospital, the equipment existed and NO ONE informed me. NO ONE. All they did was target my daughter for death and, I believe, for the organ donor market.

I spent hours being haunted by Dr. Ghoul as he pressured me to let my daughter go. LET HER GO???  She had 50% of her brain left and the 2nd neurologist told me it was far to early to determine how much was damage and what was swelling. The 1st neurologist assured me repeatedly that Brenna WAS NOT BRAIN DEAD and that her EEG was "pretty good". I honestly believe that what Dr. Ghoul promoted was outright murder.

Did I listen to him? NEVER one moment. I had no clue who he was. He just appeared and started the pressure. He popped up at odd moments, just like a ghoul. I began to notice him circling the CCU on rounds with other doctors. He reminded me of a vulture, looking for prey. My daughter was not his prey.

Get this. He comes uninvited and charges Medicare $455 for his unwanted services. It is like the town tramp showing up at your house, ordering pizza with all the trimmings, and charging you for the meal.

We can shave off at least some of the money paid out by Medicare, Medicaid, and insurance companies by dispensing with these uninvited services. If hospitals want to encourage death by starvation, let them pay for the "services" out of some other fund, perhaps out of executive staff bonuses.

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.

Cushings

Brenna was tiny when she was a baby. At a year old, she was an active ball of fire at 19 pounds. She danced throught those early years as just a little mite of a child. Then, something happened about the age of 3 1/2. She began to gain weight. No matter what we did, she gained. She never ate junk food so that wasn't a problem. We watched her diet carefully.  She became a charter member of the mall walker's club at 4 years old.

How many 4 year olds do you know who walks a mile each morning, five days a week? Not many. She did. Nothing changed.    

We took her to university pediatric specialists in two states. Nothing. They didn't even test her for anything except for psychological problems. She went to a Children's hospital. No answers. I begged doctors to please find the answer. They shook their heads.

Brenna was DX with juvenile diabetes at the age of six. We learned the term "brittle diabetes". But even by sticking with a rigid diabetic diet, Brenna's weight problems continued.

School was a nightmare for her. She was bullied first because of her weight, then her diabetes, and at last, for being adopted. Many days she ran home from school as neighbor kids tossed rocks at her. Half way through her sixth grade year, I pulled her out of public school and began homeschooling her. She took to that like a baby duck takes to water. 

I begged for answers for her health problems. I could find none. No one suggested anything more than watch her diet and exercise. I was her mother. I KNEW something else had to be wrong. I loved this child of my heart and seeing her suffer because of the mean spirits of those who chose not to understand broke my heart.

After Brenna suffered her brain injury, a day came that she was near death because of a potassium imbalance.  This event is covered in Condemned to Die. The cardiologist who took care of her was very concerned.  He looked at the pictures of her and circled one with his finger. He said, "THAT is when she began to have problems." I said, "That is when I began taking her to doctors, looking for answers."

One comment the cardiologist made that day stuck in my mind. He asked, “Has she ever been tested for Cushing’s? Have you ever taken her to a university hospital to be evaluated?” No, she was never evaluated. Yes, I took her to not one but two university specialists.

This question about Cushing’s was asked again a few months later when Brenna was in the hospital with pneumonia. The question was asked a third time by a nurse evaluator from a local rehab hospital. At no time in Brenna’s life did anyone tell me her sudden weight gain might be caused by untreated Cushing’s. No one looked, and I was not well enough informed to ask.

I began to research Cushing’s and Type I diabetes. I found one study that indicated a correlation between untreated Cushing’s as the cause of Type I diabetes.

My heart sunk as I relived all the hateful comments people had made to her about her weight all her life, the bullying at school from her peers. My heart cried at the uncontrolled tongues of willingly ignorant people, even within the church, who just couldn’t resist judging and commenting. They judged and Brenna suffered.

As I grew up, I had a beloved older brother, Eldon Clark Blaxton. He gained the name Clark because Clark Gable was the hero of the midwife who helped bring him into the world on January 3, 1945, in Cherryvale, KS. Every girl needs a hero. Eldon was mine. As a little girl, I followed him every step he took. I learned to talk by mocking everything he said. When he went away to the Univ of AL, it broke my heart. I still have a letter he sent to tell his little sister how to act around boys. Eldon was an organizer. He could organize anything, even people. He was a problem solver. I always believed that when things went wrong in my life, I could turn to him. Sadly, the older brother I loved and admired passed away in December 2003. My husband of 28 years died a year later after suffering from heart problems for many years.
After the death of my husband, I told Brenna to focus on her education. She enrolled in college and obtained her Bachelor of Science, Criminal Justice Administration in December 2008. I was so proud of her. She worked hard for the good grades she received. Believing a Masters would further her chances of working with children in the court system, she enrolled in her Master's program.
Brenna worked many hard hours on assignments. She had a personal integrity to give of her best, not just for herself, but for those who were assigned to her team projects.
When my daughter, my only child, became suddenly ill with an anoxic brain injury in May 2010, I longed for the men in my life, the men I admired, to be there to help me with the tragic journey through Brenna's brain injury. But, I wasn't alone.
Our God, our Lord and Savior walked beside us. No one tried harder to not only survive, but to recover, than Brenna did. She faced many challenges in life with grace and dignity. Our government deemed her unworthy of life...not the government of the past few years, the government as it has evolved over the last 30 years.
Our health care system is broken. The break did not happen in the last three years. When the health care system first began falling apart, I was the managing director of a children's medical trust fund in Idaho. Reagan was president. I just did not see the damage coming.
I did not realize the new ideas I saw happening were actually like cracks in a windshield. They start out slow, and, if not fixed properly and soon, the crack will spread until the window needs total replacement. I did not realize that "bio-ethics" committees were so damaging to the health and welfare of anyone with a brain injury. Now I know. You do not see them, but their illusive presence is felt in every ER, ICU, and CCU across the land.
Like millions of Americans, I assumed anyone serving on these committees actually knew something about brain injury rehabilition and their knowledge allowed them to give knowledgeable information to families making end of life decisions. That is a fallacy.
These committees are the fore-runner of the death panels that frighten so many people today as the talking heads on TV scare American citizens about the contents of the Patient Protection Affordable Care Plan Act. Before complaining about the Act, please download it and read it. You might be surprised at how beneficial many parts of the new law are.
After spending 6000 hours with my beloved Brenna in 4 hospitals and America's armpit nursing homes (2 of 3 she was in qualify for this definition), I realized soon just how un-informed these people are. They give end of life advice, based on out-dated medical school text book knowledge. Their qualifications? Pulmonologists, general surgeons, and palliative care doctors who may have no advanced training in brain injury rehabilitation. Some haven't seen med school in over 20 years. Some may not even SEE your loved one, EVER.

Families soon learn that there has been NO new, peer-reviewed, published studies on brain injury rehabilitation for anoxic/hypoxic (AKA Acquired Brain Injury, ABI) in the United States for over 25 years. Insurance companies base their determinations to treat or not treat on this lack of current peer-reviewed, published studies.
America, please wake up. What is happening, from my personal observation, to patients with anoxic brain injury is nothing short of legalized euthanasia. State and Federal governments turn a blind eye while families are pressured to end life before any tests are completed.  
Act now; the brain you save may be your own.
Pam,  Mom to my beloved Brenna Deshawn

Nursing homes--Mom's Viewpoint

    Before placing your loved one in a nursing home, go to medicare.gov and check its health inspections. Commonly that is the area where nursing homes receive the lowest rating. When you choose a nursing home, be prepared to be present to monitor conditions.  

   
    Those inspection ratings tell only half the story. Your family member suffers from the untold story. In the first nursing home my daughter ended up with bleeding bedsores, staff did not properly monitor her diabetes, and she was allowed to lie in feces and a sweat soaked bed for hours because of understaffing. Their business manager had told me to KEEP MY HANDS off my own daughter. The third nursing home was worse.

    The nurses (LPNs)in nursing homes did not know how to tell if Brenna's diabetes was getting out of control because they were using the WRONG protocol for her. They used cheap glucometers and refused to allow me to use Brenna's personal glucometer which gave readings within two points of those at the hospital. So much for the corporate mantra of, "ALL our staff is trained to spot signs of trouble." IMHO, this is a blatant misrepresentation of what actually happens.

    Corporate nursing homes are business ventures with one loyalty: to the investors. Properly caring for fragile patients eats into profits. As the first administrator told me, “This isn’t a hospital. You can’t expect anything more.” She was right. Too many nursing homes give minimum care and no one in society or the system holds them accountable.

    Years ago, I heard an older gentleman say, "A nursing home is where you go to die. I am not going there." I believe he is right.

    If you are a brittle Type I diabetic, as Brenna had been for 22 years, there is no one smart enough in nursing homes to adequately monitor Type I diabetes. Been there, done that. If anyone dies in a nursing home because of complications from their diabetes, it isn't the patient's fault. It is an inadequate system that allows bad things to happen to good people.