Love Your Brain - Mom on a Mission - Anoxic Brain Injury Awareness

06/21/2023

Folks, we really must stamp out the idea that people are "vegetative". The history behind the term is horrific.

My daughter Brenna was not a vegetable. She did not grow on a vine. She laughed, she loved, she lived. She was a college graduate.

She almost had her Masters in Criminal Justice Administration. She had hopes and dreams.

The term vegetative allows medical professionals and all those they touch to dehumanize human beings they believe are less than perfect, those who cannot conform to their preconceived idea of "quality of life".

The term vegetative allows medical professionals and all those they touch to deny therapeutic therapies for those who cannot speak for themselves. YET!

The term vegetative allows politicians and all those they touch to ignore the plight of thousands of people who desperately need recognition under the law to gain beneficial therapies that would help them live, and grow, and thrive.

It's up to those of us who love and care for someone who cannot speak for themselves to take a stand.

Stamp out the term "persistent vegetative state" forever. If not us, then who?

06/11/2023

Please share.

Do you know how many people in the US suffer anoxic brain injuries each year?

Do you know how many people in the US are diagnosed with persistent vegetative state-wrongfully so-each year?

You don't know? Don't feel lonesome. No one else knows either.

The government is not counting anoxic injuries and the DHHS refuses, according to a staff member of Senator Crapo, to do so.

Those who suffer an anoxic brain injury are treated as less than third class citizens – ignored for treatment, warehoused in one of America's substandard nursing homes, and too frequently forgotten.

Stand up and fight back. Tell DHHS and your Senators to document anoxic encephalopathy at point of diagnosis, using the current trauma registries in existence in all 50 states.

It can be done. It must be done. Nothing has changed with the government in the many years since Terry Schiavo died. Nothing has changed with the government since my daughter, Brenna Deshawn Dowd, suffered her anoxic brain injury and on May 26, 2010, and died on October 1, 2011.

Don't believe for one single second that any national brain injury organization represents the best interests of anoxic brain injuries to Congress, especially to the Congressional Brain Injury Task Force, cochaired by Congressman (founder) Bill Pascrell (NJ) and Congressman Don Bacon(NE). Their focus appears to center on sports injuries and ignores other causes of brain injury, especially those who suffer an anoxic brain injury.

One letter every month until your Senators get it. Don't get discouraged when you get back the nonsensical responses. The correspondence liaisons of every elected official sends out those types of letters. Don't give up and write again, and again, and again.

Pamela G. Blaxton-Dowd
Brenna’s Proud Mom

05/29/2023

This evening I almost talked myself out running to the store, but it was meant to be. As I stood in the checkout line, the lady ahead of me had a baby, about 18 months old. He had a tube of candy in his hand, rattling it. I asked him if he loved his mama. She told me she was his grandmother. She said that she is helping to raise him. Then she said, "His mother had a sudden cardiac arrest. She's a vegetable."

I immediately asked her not to use that word again. She explained that is what the doctors have said. I asked her if God is a vegetable. She shook her head no. I told her that we are created in the image of God and the terminology is dehumanizing to the patient.

I reached out and hugged her and explained about Brenna. I told her that the majority of doctors spouting these words have no specialized training in the recovery of the anoxic brain. That terminology dates back to the early 1970s - over 50 years. By now, we should know better. We should do better. Using the term, especially in front of the patient, robs them of hope.

We didn't have long to talk as the baby was getting antsy and trying to crawl out of the cart. I invited her to come to this page and the anoxic caregivers' group where she can get the support she needs. Hopefully, others in the family will come, too.

I'm glad I went to the store.

05/15/2023

I first posted this five years ago. Today as I approach the ripe old age of 76, I accept that I am closer to seeing her again than I was yesterday. I look forward to that day with joy, but I know God still has plenty for me to do.

Where is your faith in your daily life?

I had faith that God would heal Brenna. His healing wasn’t the jump out of bed, run across the room miracle people prayed for. He showed me that every day, every moment was a miracle.

He showed me that the small miracles count. Those who shunned her and no longer came to see her missed the blessings.

They missed the miracle of her sitting on the side of the bed. They missed the miracle of her standing in the LiteGait. And the miracle of her walking, struggling over 1000 feet around the nursing home.

They missed the miracle of her understanding that penguins are not purple. I am so glad I did not miss her life.

God didn’t promise me forever. He gave me time to love her as she became and gave me a new mission in life. He reclaimed her after 16 months.

It took me almost three years after her death to understand that her very existence in my life was for this journey I am on now. It still hurts. But, looking back on her life and all her health struggles, I am so glad God honored me with her presence.

He blessed me with that precious gift of her life. I am honored at the blessing.

Please feel free to share.

05/07/2023

Precious Brenna has been gone from my presence but not my heart almost 12 years. Today, I took one of her babydolls to Habitat where I volunteer. Later when I went out to the floor, the doll was being gently held by one of the volunteers, carried around, and getting patted. I know Brenna would be smiling that one of her dolls was being treated so.

04/27/2023

This is what patients with a brain injury are up against with a poorly educated medical profession in the recovery and rehabilitation of the anoxic brain.

RE: Cognitive policy for anoxic encephalopathy

Throughout this document, the policy refers to "quality of life". You will note that the studies BC found by the time this policy came into existence were insufficient to make a determination of efficacy of cognitive therapy for post-encephalopathy - studies no more than 6 months. The majority of the medical profession in charge of decisions for patients with brain injuries is not trained in recovery of the anoxic brain. The observation of the patients in facilities is not done by anyone with experience in brain injury recovery and rehabilitation. In nursing homes, the observers may be therapists whose experience is not in anoxic brain injury recovery. Doctors make decisions based on observations of the nursing staff, usually an LPN.

What is equally frightening, according to Medicare regulations, the doctor is not required to see the patient immediately upon admittance. The administrator in the first nursing home told me the doctor had 60 days to see the patient the first time. That's a long time to be making decisions on behalf of a brain injury patient, prescribing medicine and daily activities, for someone the doctor has never seen.

Brenna was a brittle diabetic from the age of six. A nursing home is a terrifying place to be for anyone with a critical health issue even without a brain injury. When I expressed my concern that Brenna's diabetes was not being properly monitored and asked that staff use Brenna's personal glucometer because it was better, the administrator, in front of me, called the nurses' station and ordered them to use only the facility glucometer.

The facility glucometer was used all over the facility and not readily available when needed for Brenna. They had to hunt for it. When I researched the brand, it was provided free with multiple boxes of test strips. Brenna's personal glucometer was the best on the market at the time.

Incidentally, I fell and cracked my head in the second nursing home. I do not know how long I laid on the floor before I came to and called for help on my phone. At the hospital, I was admitted to ICU. Someone made a decision, not the neurosurgeon, that I would have brain surgery the next day. Who made that call? He was a general surgeon in charge of ICU.

When the neurosurgeon came in the next morning, I was livid. He noted that I had asked for no pain meds. I explained about Brenna and told him I needed to get out of there to be with her. He said he had examined my scans and saw no reason to operate. The spot the ICU doc saw? No bigger than the head of a pin, probably a sign of aging.

Cognitive Rehabilitation (bcidaho.com)Regulatory Status Cognitive rehabilitation is not subject to regulation by the U.S. Food and Drug Administration. [Pg3]

Post-encephalitis

The 2013 updated ACRM systematic review also evaluated cognitive rehabilitation for post-encephalitis cognitive deficits. Eight identified studies were considered poor quality evidence and insufficient for forming conclusions. [Pg 24]

Section Summary: Other Cognitive Deficit Conditions Systematic reviews of cognitive rehabilitation for a number of conditions, including epilepsy, ASD, spectrum disorder, post-encephalopathy, and cancer, have generally concluded that there is no strong evidence supporting the efficacy of cognitive rehabilitation. Randomized trials of cognitive rehabilitation have numerous methodologic flaws that preclude strong conclusions about its efficacy. [Pg 29]

For individuals who have cognitive deficits due to epilepsy, ASD, post-encephalopathy, or cancer who receive cognitive rehabilitation delivered by a qualified professional, the evidence includes RCTs, nonrandomized comparison studies, and case series. Relevant outcomes are functional outcomes and quality of life. The quantity of studies for these conditions is much less than that for the other cognitive rehabilitation indications. Systematic reviews generally have not supported the efficacy of cognitive rehabilitation for these conditions. Relevant RCTs have had methodologic limitations, most often very short lengths of follow-up, which do not permit strong conclusions about efficacy. The evidence is insufficient to determine that the technology results in an improvement in the net health outcome. [Pg 30]

Blue Cross-Blue Shield - National corporate policy
Current Policy Effective Date: 3/1/23 (See policy history boxes for previous effective dates) MEDICAL POLICY - COGNITIVE REHABILITATION (bcbsm.com)

This policy was originally based on a 1997 TEC Assessment. The Assessment addressed a broad range of patient indications resulting from neurological insults, including traumatic brain injury, stroke, post-encephalopathy, and aging (including Alzheimer’s disease). Eighteen controlled trials were reviewed, primarily focusing on stroke and traumatic brain injury. No controlled trials were available that specifically addressed the remaining patient indications. No clear answer regarding the efficacy of cognitive rehabilitation emerged from the assessment. The evidence was conflicting either because of study design, low power to detect differences, or variation in treatment. The assessment concluded that data were inadequate in the published peer-reviewed literature to validate the effectiveness of cognitive rehabilitation as either an isolated component or one component of a multi-modal rehabilitation program. [Pg 3]

A Mother’s Afterthoughts [Pg 95]

A 2012 report for Blue Cross of Idaho reviewed research for cognitive therapies for “patient indications resulting from neurological insults, including traumatic brain injury, stroke, post-encephalopathy, and aging (including Alzheimer’s disease)”. While the panel reviewed 18 controlled trials that focused on strokes and TBI, they found no controlled trials available for the other indications.[Post-encephalopathy][1]

[1]Blue Cross of Idaho (2012): Cognitive therapy policies. Cognitive Rehabilitation

04/09/2023

Brenna died October 1, 2011. Even now, my sleep patterns are as they were then. Up and down, pacing the floor. 3-4 hours of sleep if I'm lucky. Our "best" mental exercise is second guessing the decisions we've made, then we kick ourselves for making decisions we now think were wrong.

We do the best we can in a world where the medical profession does not know how to treat the anoxic brain, and the majority don't want to learn. Instead of admitting they just don't know how to help us but are willing to explore possibilities with us, they spit out their continual medical myths, putting our loved ones at further risk.

We have many in the online anoxic support groups who could teach doctors and other medical professionals how to treat and rehabilitate the anoxic brain.

We learn because too many medical professionals are anoxic ignorant. Many are willful anoxic illiterates. We learn because it's OUR loved one at risk. To them, it's just another patient. We have no choice. To do nothing puts our loved ones at risk.

I would like to say things are better for anoxic patients than they were in 2010. Around the world families still face the same challenges as I did in May 2010. I see little progress in knowledge in the medical profession.

There is still no national brain injury organization willing to be our voice in DC to our government. Our government has refused to listen, refused to act. They have been asked. Our duly elected officials have chosen to ignore our pleas.

Shame on them.

01/23/2023

Please share.

My daughter, Brenna Deshawn, suffered an unexpected anoxic brain injury on May 26, 2010.

I was pushed from day one to end her life. My christian friends who are strongly against abortion rolled their eyes at giving my 27-year-old daughter, four classes from her Masters, a chance to recover and rehabilitate.

Families across this nation and around the world are pushed every day into premature end-of-life decisions by uneducated (brain injury) physicians who do not have the qualifications to determine the prognosis of healing the brain
They wouldn’t even look for what caused my daughter’s brain injury. Just a major push for ending her life, day and night.
This country has few specialists in the recovery of the anoxic brain. Doctors are not trained in medical school, and they don’t get it on the floor.

I have made six trips to DC, trying to get senators to initiate legislation requiring DHHS to document anoxic encephalopathy at point of diagnosis. The process does not have to be difficult or expensive. I’ve met the brick wall - the Barracuda Brigade - liaisons who determine what their bosses will see.

Because DHHS refuses to acknowledge this type of brain injury, there is no research available to bring hope to families. Yet, doctors in ERs and ICUs consistently use mythical studies that do not exist to convince families to pull the plug and let their loved one die.

It is a horrendous journey and a story I published (available on Amazon - not for the faint hearted) after my daughter’s death 16 months following her brain injury. She fought hard to recover in a broken healthcare system that refuses to allow the anoxic brain to heal.

And, at last I knew what probably caused her brain injury. She had an undiagnosed heart condition that needed a defibrillator at least one year prior to her brain injury. She had Long QT Syndrome. Physicians reading her EKGs did not know what they were seeing on her reports per the attending cardiologist in the last four days of her life.

I went to the Right-to-Life rally on the Capitol steps in Boise in 2016. When I approached speakers, one of whom was a state senator, I was told my daughter’s life was a “political issue”.

No right-to-life group cared when I contacted them about my daughter. One sent me a “bill” for their latest project for a Canadian infant. Another offered to put me on their prayer list at a cost of $13 with urgency levels increasing $13 at each level.

My daughter’s anoxic injury should have been counted by her government. I made five trips to Senator Crapo’s office before I moved out of state. I will continue working to get anoxic encephalopathy documented at the point of diagnosis until the law comes into existence.

It’s the least I can do for my daughter and for others who travel the same journey. My right-to-life is from cradle to the grave, from infancy to graying hair.

I wouldn’t want anyone to travel this road. But the push to prematurely end lives begins in ERs across this land by medical professionals untrained in the recovery of the anoxic brain.

Pamela G. Blaxton-Dowd
Brenna’s Proud Mom
Always and ever

10/27/2022

https://www.npr.org/2016/10/21/497849178/how-does-our-brain-get-rid-of-toxins?linkId=30320686&fbclid=IwAR0TrvWFTQE4jjEQQYzQQV6FjnQD4Hr6LgJgqqphgAEsjmpbpxcKRTeaLBw

Neuroscientist Jeff Iliff talks about his research, which explores how the brain naturally flushes out toxins during sleep.

07/04/2022

FYI

Even before carbohydrates reach the bloodstream, the very sight and smell of a meal trigger the release of insulin. For the first time, researchers have shown that this insulin release depends on a short-term inflammatory response that takes place in these circumstances.

06/08/2022

Looking back over this message, I don't know how I got through those horrific weeks Brenna was in this manmade hell. I got less than 4 hours of sleep each night, traveled 60 RT miles/day through heavy Boise traffic, seldom ate, took care of Brenna's laundry before I could go to bed. Only God could get me through it. I could not have walked through this hell alone.



Twelve years ago today, when I ran home from the hospital to take a shower, the hospital arranged to have Brenna sent to the nursing home from hell, 30 miles away.

I did not have guardianship over Brenna yet, and the case manager showed me exactly what a regional hospital could do – dump a vulnerable patient with a brain injury in the middle of hell.

When I got back to the hospital, they already had her bundled up on a gurney heading to the ambulance. I told them I did not want her in that Medicare rated one star nursing home. I had no legal support to stop the move.

When I got to the nursing home, I was not allowed to even know where my daughter was until I signed over my home. The business manager let me know that I made the wrong decision to save Brenna's life. She let her daughter die.

The business manager demanded that I sign over Brenna's bank account. I had no access to the account. She told me to just go to the bank and get the money. There are no nice words to describe this woman or the administration.

I was told I could not touch Brenna or they would call the law on me and have me arrested.

The room where they had Brenna was dark and depressing. She was in a small room with another patient who watched wrestling raw all day long. I have seen larger bathrooms.

They didn't know how to adjust the bed. Formula began running out of her nose. The RT was sitting beside the next patient sleeping. I told him to come take a look and he said Brenna had the sniffles. Brenna had not arrived there in that condition and it is a wonder they didn't throw her back into aspiration pneumonia.

When a PT supported me, he was removed from seeing Brenna.
I begged for showers for Brenna and was declined over and over. (They documented "mother declined shower ".)

I took pictures of Brenna and filed a complaint with the state.

Health and welfare said I could remove her. I took her to the other regional medical center where I felt Brenna would be safe.

Brenna had a bloodstream infection, bleeding bedsores, her skin was sloughing off her back, C diff, MRSA around the trach and PEG, and her neck and underarms were raw.

What happened to my complaint to Idaho health and welfare? Nothing. They gave the nursing home a pass on every complaint. Part of the problem is that they waited a long time before they went over and investigated. That is where I learned that facilities document what should have happened, not what did happen. I don't trust very many medical records after that.

A vulnerable patient is at most risk when placed into nursing homes where they are not trained or qualified to take care of patients with a brain injury and especially those who have other health issues such as brittle Type I diabetes.