BI Nagger

Be a BI Nagger.

What is a BI Nagger?

A BI Nagger is someone who commits to writing, on a regular basis, any brain injury organization and elected officials, both federal and state, for the inclusion of hypoxic-anoxic data collection by the CDC and the NIH.

Please become a BI Nagger.

Get a response and want to share? Send responses to brennashope@gmail.com.

Known causes of HAI to the brain

Brenna’s Hope Foundation supports legislation to include, at a minimum, these causes of hypoxic-anoxic injuries (HAI) to the brain to new legislation that requires the Center for Disease Control and the National Institute of Health to begin collecting data that may lead to research for the rehabilitation and recovery of patients suffering HAI. This data collection to be included in current criteria as used for collecting information on TBI at point of admission to emergency rooms and hospitals.

KNOWN CAUSES OF HYPOXIC-ANOXIC INJURIES TO THE BRAIN
(LISTED ALPHABETICALLY, NOT IN ORDER OF FREQUENCY)

Accidental prescription overdose
Aspiration
Asthma attacks
Diabetes
Heat exposure
Heart attacks
Low air pressure
Near drowning
Positional asphyxia (pressure to chest that cuts off oxygen)
Respiratory Arrest
Sudden cardiac arrests
Toxic exposures
- Carbon monoxide
- Chemical
- Smoke
Seizures
Suicide attempts
Surgical complications

Pamela G. Blaxton-Dowd
Brenna’s Hope Foundation
Boise, ID 83716

Traveling with God in control

Two years ago, I traveled over 8000 miles on behalf of anoxic brain injury awareness in an old motorhome that anyone could have broken into at any time. I stayed in dark RV parks, Wal-Mart's, truck stops, and behind convenience stores and casinos. Some people believed I should carry a gun. I put God behind the wheel and gave each day into his protection. 8116 miles later, I safely arrived home in Boise. Never had a problem and not one mile spent in fear.

I lived in Japan on military bases during the 50s and 60s when we were constantly reminded that the "Communists" were only minutes away. We had frequent air raid drills and spent the Cuban Missile Crisis in our high school at Naha, Okinawa watching the ships gather in case we needed to be evacuated to either Guam or the Philippines where they would eventually match us up with our mothers. I made up my mind then that I would not live in that kind of fear again.

I have spent my share of life on the wrong end of a gun and will never allow another one in my house. God is in charge of my life and with him, I have no reason to fear the future or my neighbors.

Give us a brain injury only rehab center

Give us a brain injury only rehab center

While the medical profession likes to tell families that all anoxic patients die, jerking hope out of their reach, the truth is...we all die eventually. But after watching Brenna for 16 months, I began to understand that anoxics don't die of their brain injury. They die of the inept care they receive from hospitals and nursing facilities.

Few medical staff are trained in brain injury recovery and frankly, I don’t think most of them want to be trained. If they were trained, they might actually have to do something more than throw out healing theories based on antiquated research.

Facilities allow patients to just lie around, not getting them out of bed, not sitting them up, not helping patients and families learn how to  how to deal with the many issues that come up. They are so focused on return on investment that they forget to treat patients and their families with dignity. Good patient care cuts into the profit for investors and CEOs.

The doctors kept me intimidated, knowing I had no backup. They said I couldn’t take care of Brenna. That I HAD to have five RTs for respiratory therapy and 5 nurses, that I couldn’t do trach care, that I couldn’t take care of her PEG; that I had to have lots of money to do all this.

Well all the infections were on their watch. All the med complications were on their watch. The broken teeth they didn’t take care of was on their watch. Not once did any of them have her diabetes under control. They let her range from 22-547. I had to catch their mistakes if I wanted Brenna to live. Inept is a kind word for the care Brenna received in most places. They were careless. If I hadn’t caught their mistakes, she would have died a year before she did. She lived in spite of their least efforts to give good care.

I have seen the worst possible care for anoxic patients in hospitals and nursing homes. The rule that allows facilities to staff according to census and not according to the vulnerability of patients allows the money grubbers to make big money and the patients to die. Check out the salaries of the execs and the CEOs and you’ll see why they don’t want change.

Once I was legally allowed to take over Brenna’s trach and PEG care, she never flinched or twitched again. She trusted the mother who had never hurt her. She had always put her head on her shoulder when staff cleaned her trach. Not once Mom took over. From the get-go, families need to be encouraged to participate in every bit of care and to video therapy sessions. To learn it until it becomes second nature to them.

That is why I want brain injury only hospitals and recovery centers. I want people who give a damn and can and will be fired if they even hint at the negative possibilities to patients and their families in front of the patient.

Yes, we know the negatives. That is the first thing we learn. But, our loved ones don’t need to hear it from the professionals. I watched Brenna go into depression because of their stupidity, ripping hope away from her. Their job should be to uplift the patient, every day in every way. Then, maybe we can have more success in recovery.

And not one professional who cared for Brenna in those 16 months had any more training in brain recovery than I did. And they got the big bucks for their inefficiencies and downright medical neglect.

 

The doctors kept me intimidated. They said I couldn't take care of Brenna. That I HAD to have 5 RTs on hand for respiratory care and 5 nurses, that I couldn't do trach care, that I couldn't take care of the PEG. That I had to have lots of money to do all this. Well, all the infections were on THEIR watch. All the complications with her meds were caused by them. The broken teeth they didn't take care of was on their watch. NOT once did any of them have her diabetes under control. They let her range from 22-547. I had to catch their mistakes. They weren't smart enough to. Inept is a kind word to use. They were careless. If I hadn't caught their mistakes, she would have died a year before she did. She lived in spite of their least efforts to give good care.

I have seen the worst care possible for anoxic patients in hospitals and nursing homes. That rule that allows facilities to staff according to census and not according to vulnerability of patients allows the money grubbers to make big money and the patients to die. Check out the salaries of the execs and CEOs and you'll see why they don't want to change.

Once I was legally allowed to take over Brenna's trach and PEG care, she relaxed, no more twitching when they got near her. From the get-go, families need to be encouraged to participate in every bit of care. To learn it until it is second nature to them.

That is why I want brain injury only hospitals and recovery centers. I want people who give a damn and can and will be fired if they even hint the negative crap to patients and their families in the presence of the patient.

Yes, we know the negatives, but our loved ones don't need to hear it from the professionals. I watched Brenna go into depression because of their stupidity, ripping hope away from her. Their job should be to uplift the patient, every day in every way. Then maybe we can have more success in recovery.

And not one professional who cared for Brenna in those 16 months had any more training in brain recovery than I did. And they got the big bucks for their inefficiencies and downright medical neglect.

 

 

 

 

 

The Taskmaster - Steven H. Leroy

 

Two years ago, in Brenna's honor, I began a journey across country for anoxic brain injury awareness. As you know, behind in Idaho, was a gentleman who monitored my every day, resolving problems as they arose. I dubbed him "The Taskmaster", a name that secretly thrilled him. Until now, I have kept his identity private.
 

Idaho lost a special person on October 1, 2014. The Taskmaster, Steven Harry Leroy, passed away of a heart attack at a Las Vegas hospital. Steven had suffered from congestive heart failure for many years. In 2013, he spent 10 days in the hospital here in Boise. It was touch and go for a few days.  The hospital stay had frightened him. When he was released from the hospital, I knew he could not live alone ever again. His health was just too fragile. I invited him to live in my home. A decision I have never regretted. His daily routine included morning and afternoon naps and early to bed at night. For relaxation, Steven frequently was sitting in my back yard by the lake, watching the geese.
 

Tippy and Gibbs fell in love with Unca Steven, quickly realizing that Steven was a great source of treats. And, Gibbs never barked at Steven as he does everyone else that enters the house. Unca Steven was special.
 

The first time I met Steven was at the inaugural reception for former OK. Governor, David Boren. Steven was one of the young Democrats from DC that day. He recognized that in that fish bowl of politicians, I was out of place. With his usual intensity, he questioned me about myself, but revealing little about himself. I didn't know it then, but that is the way Steven was.

Steven and I next met in 1992 when he taught a media relation's class when I was on city council in Twin Falls. Something struck me about the way he worked. I had never forgotten him and believed after Brenna's death that he would be the one to help me plan and implement the journey I wanted to take. The entire world is familiar with TBI, but few know what anoxia is...a loss of oxygen to the brain.  Steven didn't know at first either, but he learned. From the first moment that he opened up an email from me on July 5, 2012 that landed in his spam box, Steven was hooked.
 

We spent hours brainstorming on my porch for ways to open the doors to legislation for anoxic brain injury awareness. When the weather was bad, we sat across from each other in my living room, emailing our ideas, until he felt it was good enough to send or print. He insisted that I practice a speech until he felt comfortable that I had all the points right. He prepared practice questions for me. When he felt I answered them "too professional", he sent them back to me and asked, "Where did my mother go? You are a mom on a mission, not a pro."
 

When it came time to set up a web site, the team hired to design the site sent a list of available names. I wasn't crazy about any of them and asked Steven to review them. The next morning, I got an early wake up call,  "Open your email. You have a new web site." He refused to tell me and insisted that I had to read it. When I saw the name, I couldn't help but chuckle...he had named it luvurbrain...because I constantly told him how much I loved his brain.
 

Steven knew from his research that there was little information available on hypoxic-anoxic injuries to the brain. No research was being done on rehabilitation of an anoxic brain. He knew that none of the therapists and nurses who had cared for Brenna were brain injury certified. He wanted to change that with a scholarship program through Brenna's Hope.
 

Steven was the driving force behind Idaho's first TBI Summit in May 2013. Watching him prepare everyone was a real education. Steven came alive, doing what he did best. It was a joy to see. He also tackled his work for Brenna's Hope with gusto. One day I asked him why he didn't put BHF on his resume. He said, "I don't want the attention. I do it because I believe in the cause." I told him then that the only way he could keep me from telling anyone about his involvement was to outlive me because if he dared to die first, I would make sure people knew what a compassionate heart he had.
 

Over the last 27 months, Steven became my best friend, a man I valued and loved deeply. I learned from him. He brought me into the world of politics and taught me that getting a new law passed would need to be taken with baby steps. He introduced me to Senator Crapo's staff and when I got to DC in Nov 2012, he met me to guide me through the jungle of subways. When I would get frustrated, wanting change NOW, an emotion Steven felt was wasted, he would remind me to "take a deep breath and rest". And he didn't believe in anger, another wasted emotion. And in so many ways, we were alike.
 

More recently, before his untimely death, Steven was visiting his brother in FL. Steven wasn't feeling well, but he really wanted to go. Nothing could have kept him from making that trip.  From FL, he constantly sent messages of what I needed to be getting done for BHF before he got home. Get the brochures done. Get the PayPal set up. So many little things and he kept them all in order in his brain, keeping me organized.
 

Then he made his last phone call. It wasn't about business. He didn't want to hear about any of my friends. He didn't want to hear about my neighborhood. He only wanted to hear about me. See how I was doing. Remind me to see the doctor for myself. To tell me again, "Pamela, take a deep breath. Rest." He was my health guardian.
 

One of his main focuses over the past two months was whether or not I had a motorhome ready to roll. The old Bounder was long gone, having worn her out. I did find a good deal on a Winnebago from a one owner and prepared it for a long trip. Steven had more work to do and he felt he could do it from an RV as well as he could at home. He promised me that our RVing wasn't over.  Before Brenna got sick, she had found a corporate retreat for sale. It would make an ideal brain injury recovery center. Steven's job, he thought, was to get the price greatly reduced. My idea was that with his gift of gab, he could talk the long retired owner into donating it to a good cause.
 

It is difficult to believe that I will never hear the timber of his deep baritone voice again. Never have him surprise me with crab again. Never have him planning an outing again. Never saying, "Pamela, you need 8 hours sleep." "Pamela, these people don't need to be calling you so late at night."
 

Steven will always be The Taskmaster, the man of my older years, who came into my life and made my days bright again.
 

In his honor, Brenna's Hope Foundation has established Steven's Hope Brain Injury Education Fund at Wells Fargo Bank, to provide scholarships for therapists and nurses to become brain injury certified.
 

Rest in Peace, Sweet Steven. Until we meet again on Heaven's shore.

Letter to Idaho Congressional Delegation. Please feel free to use and personalize as an example to send to your own senators and representatives. Post any communications to their online web sites as that creates an automatic legal record. Thanks. Pam

*****

As a mother who understands the pain a parent feels when something critical happens to a child and as someone who cares about protecting the life of the innocent, I urge you to please join me in my fight for equality of treatment for those who suffer a hypoxic-anoxic injury (HAI) to the brain.

For the past two years, I have been working with Senator Crapo’s staff regarding the lack of research for patients suffering from HAI. My twenty-seven year old daughter suffered a medically unexplained HAI in May 2010. She fought hard to recover for 16 months in a health care system that has increasingly over the past 30 years become cold toward her type of diagnosis. What happened to her could happen in any family.

Her treatment, or lack thereof, was based on an outdated diagnostic definition of persistent vegetative state (PVS), dating back to 1972. What I learned in the process is that few, if any, of the medical professionals who worked with her over the next 16 months were knowledgeable about the recovery of the brain following HAI. Yet, they make daily decisions on the critical decision of who lives and who dies.  None of those who worked with Brenna knew any more about rehabilitation of the brain than I did at the time of her injury. By the time I had spent a month by her side, researching every possible avenue, I believe my knowledge of what the brain could do to heal far exceeded theirs. This is not arrogance on my part. This is the truth I faced.

Daily I am in contact with hundreds of families around the world who are working through recovery of HAI. They are my inspiration to move forward after the loss of my daughter October 1, 2011.

Recently, I began researching the ugly term “persistent vegetative state”.  The term is long overdue for retirement from our vocabulary. I have seen miracles of healing after a family heard this diagnosis.  

Please read the attached letter I sent to Senator Crapo regarding PVS and help me make changes in how our society views and rehabilitates those who suffer a DX of PVS or HAI.

The families I reach daily would like to see the term” persistent vegetative state” permanently retired. As we no longer use “retarded” in DX of human beings, so must we end this usage of PVS.

And, please help me in my fight to include HAI into the CDC requirements for data collection. As things stand, HAI patients are being denied care, therapy, and durable medical equipment, based on lack of data collection.  I am including a list of known causes of HAI.

Lack of data = lack of funding = lack of research = reduced therapeutic opportunities.

I plan to be in Washington, D.C. when the new session begins, ready to work on these issues with any staff members you can assign.

We are all a breath away from being in the health crisis that faced my daughter.

Sincerely yours: 

Pamela G. Blaxton-Dowd
Brenna’s Mom , Founder, Director
Brenna’s Hope Foundation
PO Box 5002
Twin Falls, ID 83303-5002


Enclosure: Known causes of hypoxic-anoxic injuries to the brain

Brenna’s Hope Foundation supports legislation to include, at a minimum, these causes of hypoxic-anoxic injuries (HAI) to the brain to new legislation that requires the Center for Disease Control and the National Institute of Health to begin collecting data that may lead to research for the rehabilitation and recovery of patients suffering HAI. This data collection to be included in current criteria as used for collecting information on TBI at point of admission to emergency rooms and hospitals.

Known causes of hypoxic-anoxic injuries to the brain

Accidental prescription overdose

Asthma attacks

Heat exposure

Heart attacks

Low air pressure

Near drowning

Pressure to chest that cuts off oxygen

Sudden cardiac arrests

Toxic exposures

            Carbon monoxide

Chemical

            Smoke

Seizures

Suicide attempts

Surgical complications

 

Letter/Senator Crapo re: PVS misdiagnosis

Brenna’s Hope Foundation           PO Box 5002           Twin Falls, ID 83303-5002              Founder, Director: Pamela G.            Blaxton-Dowd

The Honorable Mike Crapo
United States Senate
239 Dirksen Office Building
Washington, D. C. 20510-1205

Dear Senator Crapo:

After reading the New England Journal of Medicine 1994 report, Medical Aspects of the Persistent Vegetative State[1], I am saddened by the lack of follow-up by the medical research community for this devastating diagnosis. Much of the background information is based on information that is at least 30 years old now, and the original definition of PVS originates in 1972. The DX of PVS is dehumanizing and robs a person of their individual dignity. It is past time to retire this DX from our vocabulary.

Scrolling through the article to the “Future Directions”, I am not surprised to see that no further articles appear in the NEJM, updating this medically dehumanizing DX with new research.

 “Although investigators have learned much about the persistent vegetative state over the past two decades, several areas deserve additional study.”[2]  This report indicated a need for more studies and research.  One can only ask. Where are those research projects? If any of these projects were ever undertaken, where are the results?

§  In the area of epidemiology, improved data on the incidence, prevalence, and natural history of the persistent vegetative state would be available if health authorities recorded such a state in patients, in addition to its underlying cause.

§  More careful clinical studies of individual patients could provide data to determine which clinical findings are critical for the diagnosis of a persistent vegetative state.

§  Future PET studies should measure regional cerebral blood flow or glucose metabolism in response to visual, auditory, and somatosensory stimulation, to determine whether depressed cortical regions in patients in a persistent vegetative state can be activated by peripheral sensory stimuli.

§  A confirmation of the absence of evoked activity on the PET scan would help defend the assertion that patients in a persistent vegetative state are completely unaware and insensate²¹.

§  Single-photon-emission computed tomography (SPECT) may be used to study changes in blood flow. SPECT findings generally parallel PET findings, but SPECT units are less expensive and more widely available.

§  Finally, studies should include larger numbers of patients in a persistent vegetative state to establish clinical predictors of recovery of consciousness, other neurologic functions, and survival based on age, cause of the vegetative state, and other comorbid factors.

§  Outcome studies should determine the degree of disability in patients with a late recovery of consciousness. Studies of children with developmental disorders causing a persistent vegetative state may show how they differ from patients in a vegetative state as a result of injuries or degenerative or metabolic disorders.[3] 

A current, published report by researchers at the Owens lab at the University of Western Ontario indicates that patients DX with PVS responded to outside stimuli when patients DX with PVS viewed the Alfred Hitchcock movie Coma.[4]  This affirms a study reported in 1996 by the British Journal of Medicine[5] that 43% of patients were misdiagnosed and can achieve a better level of recovery than previously expected.

I urge Congress to pursue legislation that would rectify this lack of PVS research, directing the Center for Disease Control to begin collecting data on diagnoses of PVS. Many of these patients suffer from hypoxic-anoxic injury (HAI) to the brain and are currently being ignored by the CDC for data collection and research.

Sincerely:

Pamela G. Blaxton-Dowd
Brenna’s Mom , Founder, Director
Brenna’s Hope Foundation
PO Box 5002
Twin Falls, ID 83303-5002

---

[1]NEJM (1994) http://www.nejm.org/doi/full/10.1056/NEJM199405263302107#t=article

[2]NEJM (1994) http://www.nejm.org/doi/full/10.1056/NEJM199405263302107#t=article

[3] NEJM (1994) http://www.nejm.org/doi/full/10.1056/NEJM199405263302107#t=article

[4] Naci, Cusack, Anello, Owen (2014: ) http://www.owenlab.uwo.ca/pdf/2014%20-%20Naci%20-%20PNAS%20-%20Hitchcock.pdf

[5] Andrews, Murphy, Munday, Littlewood (2010): http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2351462/?tool=pubmed

Erase the ugly term persistent vegetative state

Old Diagnosis of PVS (persistent vegetative state)

                           Change to

New Diagnosis of PVS--Positive Visible Success

The old terminology is antiquated and dehumanizing. When a person has a brain injury, he/she is either brain dead or alive and needs immediate opportunities for rehabilitation and recovery.

The change begins with those of us who have heard this ugly term attached to someone we love. The change starts with us.

Anything we see that is a response of the pre-injury person is Positive Visible Success. Our loved one is struggling to overcome the injury. Let's give them a chance.

Presentation: ID State House of Representatives 3/26/2012

            March 26, 2012 at 08:30,
Idaho State House of Representatives State Affairs Committee on behalf of Brenna.

Ladies and Gentleman of the Committee,

Thank you for this opportunity to speak on behalf of Senate Bill 1348.

My name is Pamela Dowd, Boise, Idaho. I want to talk about two hospitals with two different attitudes.

I speak today on behalf of my only child, my daughter, Brenna Dowd. She was 27 years old when she suffered a medically unexplained hypoxic brain injury following a retina repair surgery.

On May 26, 2010 at 3 AM, my daughter and I held our last normal conversation. Six hours later, she was breathing but unresponsive.

She was transported to a regional hospital. Over an hour passed before the ER doctor came to give me an update. I wanted Brenna to know her mother was present. He said it would do no good. I wanted to be at her side. The request was denied.

When she was transferred from ER to CCU, I saw abject terror on her face. The negative talk scared her. While physicians felt she “couldn’t understand”, she did. During the following days, I was repeatedly approached to end her life, starve her to death. She was not brain dead. Her EEG was “pretty good” and her brain stem was healthy. One neurologist said it was too early to differentiate between damage and swelling.

I researched treatment and rehabilitation. The response of the CCU doctor in charge was: “No matter what you suggest, I will not change my way of treating her." The CCU doctor refused to contact Brenna’s own physicians. She refused to do anything to reduce swelling in the brain because, in her opinion, Brenna did not have the right kind of injury to cause swelling in the brain. This statement was in direct contradiction to the second neurologist. Pressure to end my daughter’s life continued.

Then, without my permission and against my direct request not to do so, my daughter was suddenly dumped into a Medicare rated one star nursing home, miles from home.

After rescuing Brenna from this nursing home, she spent time in another hospital. There I discovered she had teeth broken at the gum line. I begged for a dentist for her. I was totally ignored and Brenna was allowed to suffer. 4 ½ months before she had to have all her teeth removed, 5 teeth broken, the rest were splintered.

For 15 ½ months I begged to take my daughter home and was denied at every turn. Then, at last it was possible. Eight precious days.

On September 26, 2011, Brenna suffered a sudden cardiac arrest.

This time, Brenna was transferred to the hospital of my choice. This time the experience was different. A hospital chaplain came to be with me. When she began to talk to me in what I called “hospice jargon”, I asked her not to use that terminology. She respected my request and stayed by my side most of the next few days.

I was allowed total access to my daughter in ER. No one suggested that I leave.

In ICU, Brenna was placed in a medically induced coma with Theurapeutic Hypothermia. This therapy reduces swelling in the brain and protects the brain from secondary injury. When she began having seizures, the doctor ordered more testing.

At all times, my daughter was treated with respect and dignity and my concerns addressed. I requested that any discussion of the results of her tests be kept out of her room. That request was honored.

When all tests results were in, I knew that this time, my daughter was not going to recover. There would be no rehabilitation.

I asked to take her home. The staff worked to make it possible.

On October 1, 2011, my daughter came home. We settled her comfortably in her bed and removed her life support. I cuddled my daughter in my arms one last time and this time, I let her go.

The difference in the two hospitals is simple: In the first hospital, they treated a living patient as if she should die. In the second hospital, they treated a dying patient with hope as if she would live.

Today is the 26^th, six months since Brenna’s SCA.

On Brenna’s behalf, I urge you to give this bill serious consideration and pass it from Committee.

Thank you.

National Day of Prayer of all with brain injuries

March is Brain Injury Awareness month. Let us start the month right with a day of prayer.

Brenna's Hope Foundation calls for a national day of prayer for all faiths on March 2, 2014 for all people who suffer a brain injury.

Please mark your calendars and spread the word to all your social media outlets.