Letter to Senator Crapo

Pamela G. Blaxton-Dowd

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

August 20, 2012

The Honorable Mike Crapo

251 Front Street Suite 205

Boise, Idaho 83702

Dear Senator Crapo:

On May 26, 2010, Brenna, my 27 year old daughter suffered a medically unexplained anoxic brain injury, that occurred as an awful byproduct of an eye surgery she had the day before. Brenna died on October 1, 2011, not as a result of the brain injury, but as what I believe is the most tragic of circumstances, a compilation of inconsistent therapy, poor diabetic care for her Type I diabetes, multiple institutional infections, medical errors that caused internal bleeding and blood clots, a potassium imbalance that almost caused her to have a heart attack, and long term infection from untreated broken teeth.

I have chronicled her nightmarish journey through our broken health care system in a newly released book. In September, with Brenna’s two grieving dogs, I will embark on a three month, personally financed nationwide tour, not primarily as a book tour, but to meet with brain injury victims and their families in every region of the United States. I feel strongly that I must do this to honor my daughter who would expect no less from her mother.

The purpose of this one woman two dog odyssey is to empower other families who are facing a health care system that struggles with answers to rehabilitation and recovery of brain injuries, Traumatic Brain Injury (TBI) and Hypoxic-Anoxic Injury (HAI), and, in my opinion, offers inadequate post injury therapeutic support to both the injured, their family members, and health care professionals who assist in the recovery process.

In my personal visits with health care professionals at all levels, one thing has became abundantly clear; the mysteries of brain injury treatment and recovery care are, in many ways, still great mysteries. As I travel across the United States, I feel it is important for me to be part of a national catalytical dialogue about how this country’s health care system treats brain injuries and how they involve the family in the post injury therapeutic recovery process.

As I prepare for this trip, I wanted to take the time to correspond with you and ask you a few questions that I am getting from brain injury patients and their families around the country. We would appreciate any guidance you could offer about this important issue.

Obviously some of the questions have historical references and some ask about the direction you and others in the Unites States Senate leadership believe this country should be taking in the future of brain injury rehabilitation. This question is asked in light of the increased number of brain injuries reported in federal medical facilities across the country, especially those war related head injuries seen in soldiers returning from Afghanistan and Iraq.

Any information you can offer me in answering the following questions would be greatly appreciated:          

1. Is there a federally imposed quota system restricting to 35% the number of Hypoxic-Anoxic Injury (HAI) patients accepted to brain rehabilitation hospitals that receive federal funds? In a conversation with a brain injury evaluator from Baylor University last year, the evaluator informed me of a “federally mandated quota” for HAI patients. Additionally, the same evaluator indicated brain injury rehabilitation hospitals were actively working to reduce this quota.
2. Is there any federal funded research establishing which manufacturing industries report the highest number of cases of HAI or TBI resulting from chemical exposures or work place injuries? If not, do you believe such a study would be helpful to health care professional and who do you believe should conduct such a study?
3. Are you aware of any statistical information regarding the actual numbers of cases of HAI reported in the United States on an annual basis?
4. Does the United States government have any statistical information on the rate of success in the utilization of therapeutic hypothermia that prevents further brain injury after the initial brain insult?
5. Does the Unites States government have any current statistical information regarding the use of HBOT—Hyperbaric Oxygen Therapy for brain injury rehabilitation? Additionally, what is the federal policy concerning the use of hyperbaric chambers that are located at federal medical institutions or at federal military installations? Are members of the public allowed access to these facilities and, if so, under what conditions?
6. Are there federal guidelines that define Medicare and insurance guidelines concerning hypoxic-anoxic brain injuries treatment and therapy? If such guidelines exist, where can they be found?   insurance company guidelines that discriminate against anoxic/hypoxic brain injury. Since DX codes for anoxic/hypoix brain injury do not include length of coma, unlike TBI DX codes, we need data around length of coma and corresponding outcomes.

    7. Are there any federally recognized experts on HAI rehabilitation?

Senator Crapo, any information or guidance you can provide us will be accepted with both grace and appreciation. I know much of the burden of the research in answering my questions will fall on the shoulders of your staff or other relevant committee staff. For your efforts and theirs I am truly grateful.

Sincerely yours:

Pamela G. Blaxton-Dowd

Coma/Brain Rehab Hospitals

Partial list of Coma/Brain Rehabilitation Programs

 

Facility	Location	Criteria	Phone/Contact
Craig Hospital (Rehab)	3425 S. Clarkson St. Englewood, CO 80113	Off Ventilator Early referral is recommended	Traumatic Brain Injury Model Systems National Data and Statistical Center (TBINDSC) Any Referral 303-789-8344 Phy Referral 303-789-8220 FAX Records 303-789-8699
Shepherds Center	Shepherd Center 2020 Peachtree Road, NW Atlanta, GA 30309-1465	Coma-stimulation program and a program for ventilator-dependent patients	404-350-7345 admissions@shepherd.org.
Rehab Institute of Chicago	345 E. Superior ST Chicago, IL 60611	Range of disabilities from complex conditions like brain injury, spinal cord injury and stroke	1-800-883-3931 https://www.ric.org/contact/appointments/Appointment_referral.aspx
TIRR Memorial	1333 Moursund ST Houston, TX 77030 Get Directions	Include brain injury, research, communication and brain injury, sexuality and brain injury, and acquired brain injury, as well as focus on outcomes.	(713) 799-5000 http://www.memorialhermann.org/locations/tirr/forhealthprofessionals/content.aspx?id=1162
Spaulding Rehabilitation Hospital	Boston, MA	Treat individuals rehabilitating from open and closed traumatic brain injury (TBI), anoxic or hypoxic encephalopathy, and aneurysms, as well as coma-level and coma-emerging patients. These patients need intensive rehabilitation to confront major physical, cognitive, and emotional challenges.	Referral by Physician (888) 774-0055

Brain Injury Stats-In short

This is what is happening in the world of brain injuries.

Figures taken from CDC, BIA

TBI
 

(CDC, BIA)
1.7 million TBI/YEAR=4658/DAY=194/hour=8/MINUTE

STROKES

795,000/YEAR=2178/DAY=91/HOUR=1.5/MINUTE

No apparent tracking for hypoxic-anoxic brain injury for other causes than stroke.

Ancient Mesopotamians knew about brain injuries

I have been reading fascinating excerpts from a book by Jo Ann Scurlock and Burton Andersen.Diagnoses in Assyrian and Babylonian Medicine: Ancient Sources, Translations

Did you know? Ancient Mesopotamians recognized that seizures, loss of sight, loss of hearing, and paralysis are the result of head or back injury.

Visual loss is secondary to head trauma. According to the authors, a damaged second cranial nerve can cause visual problems after a head injury.

Brenna suffered a concussion and a back injury in 2009 in an auto accident near Joplin, MO. No one told us to monitor Brenna for visual complications. In fact, in the four days she was in the hospital, she never saw the doctor after leaving the ER. His bill was almost $1500. He almost let her die the first night when the insulin pump went out and the hospital had no way of refilling it. He refused to order  an insulin shot for her. Her BG reached 709. I had to take the totaled out pickup 20 miles in the dark to the RV park to get insulin supplies for her.  No lights in the rear.

BTW: I had suffered a concussion, too, and had passed out in their ER by Brenna's bed. They let me sit under a cold AC outlet, fading in and out of consciousness for 3 hours before getting me in to see a doctor. No way should I have been driving a vehicle with no lights at 5 AM.

When I later questioned Brenna's vision loss, the lawyer "representing" us said no one could prove the connection. Perhaps he should have done a bit of research. If the ancients knew this, and it has been stated in more modern publications, he should have been able to find the information.

A TBI can lead to serious problems that can later develop into an anoxic brain injury. It did for Brenna. A concussion is never simple. If you believe nothing else, please believe this.

Tell the one you love

If you love someone, tell them today. Do not wait until tomorrow. Tomorrow may never come.

When I think back to the wee hours of the morning before I discovered my daughter in an unresponsive state, I am so glad that at 3 AM that morning, I held her close to me and let her know how much I loved her.

When choosing to care for a loved one with a brain injury, it takes

Patience

Love

Committment

 

For so many of us who have cared for a loved one with a brain injury and many of you still do, we did not make a conscience decision to preserve their lives.  Our hearts knew what to do. We acted on our love.

Living or dying?

Are you living to die or dying to live?

In 1985, I began my course work in hospice in south central Idaho. I found the classes to be very interesting and comforting to know that in a time of family crisis, I could help others.

One man who came to the class to speak with us has held a place in my memory all these years. I do not remember his name but do remember his sad story. For the purposes of this message, I will call him John.

Twelve years before visiting the class, John had been diagnosed with an inoperable, benign brain tumor. Doctors did not know how long he would live, how long it would take for the tumor to entwine itself so deeply into the brain that one day, John would die.

In those 12 years, John planned nothing. He never accepted invitations for family dinners or other social activities. He didn’t take vacations. He didn’t plan on birthdays. He didn’t buy anything new because he might not live to enjoy it. Whenever an invitation was issued, John’s stock answer was, “Don’t plan on me. I may not be here.” John lived a temporary life.

When John was asked to speak to our class, he at first refused. At last he agreed that if the person inviting him came by to pick him up and he were still alive, that he would come.

In twelve years, John had not lived. John was living to die.

I think back to 1975 when I was diagnosed with breast cancer at the young age of 27, the youngest in the state at that time, according to what my surgeon knew. The most devastating part of the diagnosis was not the cancer; it was the statement that in those days, having my own child and surviving to see the child born or to raise a child were 100% failure. There were many moments when I just wished the doctor had closed me up and let me die.

Then in 1983, through adoption, God blessed me with my beautiful daughter. Her arrival exceeded all my dreams, filled my aching arms, and loving her, filled in the gaps of my broken heart.

Most of you have read enough of this blog to know how my daughter lived, how she struggled to recover from a hypoxic-anoxic brain injury for 16 months, and how she died on October 1, 2012.

I spent the winter writing her book, Condemned to Die: Ask me how. Tell me why. As I finished the book, my heart said, “Can I come home now, God?” Brenna’s little min-pin Gibbs put his little feet on my knees, looked at me as if to say, “Grammie, Brenna left me to you.”

While I knew I was to complete Brenna’s mission on earth, I saw no real future for me. I had joined many others who were just living to die.

I wandered in my brain. I just wanted to move… anywhere. I thought I would just get in the old motor home with two dogs and just amble from place to place, no future planned, no real goal in mind except to someday go to Washington, DC, to speak with congressional leaders on the failures of the broken system. I had no real plan.

God placed the Taskmaster in my life to refocus and remove the burden of the logistics from my shoulders. Even then, I had no plan.

Then July 29, 2012, I woke up in the morning and knew; I wanted to live. I wanted to see the sun rise again.

My heart will always grieve the loss of my precious Brenna Deshawn. Yet, I know that she wants me to move ahead with her mission that God planned for her life. I know she wants her mom to be happy again.

On July 29, 2012, I truly joined the living again. I now am dying to live. I would rather have a few moments of happiness and joy than to live my life, wandering aimlessly through life, never planning anything for a future, never looking ahead.

My question to you is: Are you living to die or dying to live?

 

 

 

Taken Monday, September 10, 2012

Teach me to Pray

First of all, then, I urge that supplications, prayers, intercessions,
and thanksgivings  be made for all people,     I Timothy 2: 1

When I was a little girl, my parents never taught us to pray; “Now I lay me down to sleep.” We were taught to pray for whatever was in our hearts and for anyone we knew who might need a boost with prayer. We never had a time limit on prayer. When my mother prayed, I knew she touched Heaven.

    When Brenna grew old enough to say her own nighttime prayers, I followed the leadership of my own parents. Each night before sleep, we had a routine of reading a story from a favorite book, a Bible story, and prayer time. If a babysitter failed to follow this nightly plan, Brenna insisted that they not come back.

    As she grew, her prayers matured. She had a quiet spirit, seldom volunteering to pray in public. She had seen too many people praying loudly, and in her opinion, praying more for attention than with sincerity.

    When we ate out, she added a special prayer for those who waited on us, those who prepared the food, for their unknown needs, for the people across the restaurant who seemed to be facing heartache. She quietly observed those around her and included them in her prayers, asking God to bless each and every one.

    It is no wonder that at times, someone working in the restaurant would come to Brenna, asking for her continued prayer for a special need. Brenna lived her faith in a quiet way, but in a manner that strangers understood as genuine.

   

 

 

 

 

 

 

 

 

Honk if you love your brain

This is the mockup of the sign that is being created by Signs Now of Boise. The sign will be installed on Monday. Expect to see the motor home throughout Idaho and Eastern Oregon in the next 10 days before I get ready for the big trip East.

A more than fair deal

Today was a great day.

Last week, while at Ponderosa State Park, I had a bit of a brush up with a tall pine tree. The reservations map said the site would fit a 40 foot motor home. Not so! My motor home is 34 feet. While trying to avoid the large concrete blocks that guard the electric and water hook-ups, I hooked the rear of the motor home on a tree. No major damage but it did pull the passenger corner off a bit.

What to do? I turned to the Taskmaster who always seems to have an answer or know where to find one. He set up an appointment at Spangler’s Body Shop at 11650 West Fairview in Boise. Before going to that appointment, I went to the generator shop to figure out why the generator wasn’t running. After an hour+ there, the mechanic told me I needed a carburetor that was not in stock anywhere in the US and wouldn’t be until the end of Sept. They told me it also needed a fuel pump. No need to spend money on a fuel pump if I didn’t have a carburetor.

I went ahead to Spangler’s.  Kevin Spangler gave me a more than fair price to fix the motor home. I told him about the generator. He called a customer who just happens to work on generators. I left the motor home there. Yesterday the generator repair man from Gem State Generator Repair called and said the problem was not the carburetor or the fuel pump and gave me a price. I expected the repair to be done within a few days.

Well, this morning I got the call. All the repairs were done and under the bid price. Both repairs cost me less than what I had expected to pay for the body repair alone.

Then on to Signs Now on Maple Grove in Boise where the “Honk if you love your brain” wrap sign will be made. We didn’t have the graphics yet but by 5 PM, I had approved the graphics and the sign will be made on Friday, ready to install on Monday.

This evening as the Taskmaster and I were watching the Giants/Cowboys game, I asked him if he thought God pushed the motor home into the tree so I could find the right person to repair the generator. He smiled and said, “I was thinking about that.”

I am grateful to the Taskmaster and his giant fount of knowledge that seems to know just the right people I need to get me ready for this journey.

Thanks to Kevin Spangler, who not only fixed the body and called someone to fix the generator, he made sure I had his info in case I have trouble on the road. He did a great job on the repair and treated me fairly on the price.

Also, thanks to John at Gem State Generator for his expertise in doing what I had been told couldn’t be done. The price he charged was much less than what he quoted.

Yes, God can get our attention by pushing an aging motor home into a tree. The repairs were done God’s way by people he chose.

Now, I can get ready for the trip and not worry about the big things.

God is good.

 

 

Thank you, NFL Commissioner Goodell and owners

Pamela G. Blaxton-Dowd

                                                Condemned to Die:  Ask me how. Tell me why.
                                                                    pgd83716@yahoo.com

September 5, 2012

Commissioner Roger Goodell

c/o The National Football League

345 Park Avenue

New York, New York 10017

Dear Commissioner Goodell:

I want to express my gratitude for the generous donation the National Football League gave to the National Institute of Health for Traumatic Brain Injury research.

On May 26, 2010, Brenna, my 27 year old daughter suffered a medically unexplained anoxic brain injury, that occurred as an awful byproduct of an eye surgery she had the day before. Brenna died on October 1, 2011, as a result of many complications associated with the brain injury.

I have chronicled her nightmarish journey through our broken health care system in a newly released book. In September, with Brenna’s two dogs, I will embark on a three month, personally financed nationwide tour, not primarily as a book tour, but to meet with brain injury victims and their families in every region of the United States. I feel strongly that I must do this to honor my daughter who would expect no less from her mother.

The purpose of this one woman two dog odyssey is to empower other families who are facing a health care system that struggles with answers to rehabilitation and recovery of brain injuries, Traumatic Brain Injury (TBI) and Hypoxic-Anoxic Injury (HAI).

In my personal visits with health care professionals at all levels, one thing has became abundantly clear; the mysteries of brain injury treatment and recovery care are, in many ways, still great mysteries. As I travel across the United States, I feel it is important for me to be part of a national catalytical dialogue about how this country’s health care system treats brain injuries and how they involve the family in the post injury therapeutic recovery process.

As I prepare for this trip, I wanted to take the time to correspond with you and thank you and the NFL team owners for the effort they are making for TBI patients, regardless of the original source of their injury.

For that, Commissioner Goodell, I commend you. As a 65 year woman who has never watched a live or television broadcast of a NFL football I want you to know I am now a big fan.and insurance company guidelines that discriminate against anoxic/hypoxic brain injury. Since DX codes for anoxic/hypoix brain injury do not include length of coma, unlike TBI DX codes, we need data around length of coma and corresponding outcomes.

Sincerely yours:

Pamela G. Blaxton-Dowd

NFL Scores Big for TBI

NFL Scores Big for TBI

Congratulations to the NFL for their $30 million donation to the National Institute of Health for  brain injury research. Their generous donation will help soldiers and athletes who suffer brain injuries.

Please go to their site and read the article. It would help if we also posted our thanks on the site.

I will be posting a thank you letter to the FB site later today. If anyone has an NFL team in your area, please contact the local team owner with your thanks. I don’t have an email address for Mr. Goodell but a snail mail letter of thanks would go a long way to helping bring recognition to the rehabilitation and treatment for our loved ones.

National Football League
345 Park Avenue
New York, NY 10017

http://www.nfl.com/news/story/0ap1000000058447/article/nfl-donates-30-million-to-national-institutes-of-health?module=HP11_headline_stack

 

God is the Glitch

God is the Glitch

Have your life all planned out, know what you are going to do with your life, and then suddenly life takes a turn in an unexpected direction?

When that happens, God is the glitch. God is saying, “Back up. I am in charge and you aren’t going the direction I want you to go.”

I had a major moment like this in my life in 1994. I want to share it here.

In late 1993 I decided not to run for another term on city council. I felt at peace with the decision. Then during the spring of 1994, I decided to throw my hat in the ring for county commissioner. I won a 5 way Republican primary, beating out the incumbent and three others. It looked like smooth sailing in a county that was predominately Republican.

During that summer and fall, I attended the fairs, picnics, and parades, meetings, hearings, and candidate forums. I went to everything where a candidate was supposed to go. Everyone said I was a shoo-in.

We posted signs and my husband even built a huge sign, lit with white Christmas lights, on the west end of town.

The night before the election was cold and rainy. We went to a dinner at church. After the dinner, I felt pressed to go to the big lit-up sign. When I pay attention to those inner feelings, I learn something. 

The sign was sitting high on a berm where no one could miss it. I got out of the car and walked alone to the bottom of the sign.

As I stood at the sign, I gave the election into God’s hands. I wanted to win. I knew I could do a good job. But God had other plans.

As I stood with head bowed, I heard a gentle voice say, “And if I ask you to lose?”

I didn’t question. With tears streaming down my cheeks, I slowly walked back to the car. I looked at my husband and said, “It’s over. I will lose the election.”

The next day was difficult. My supporters were so positive and uplifting. How could I tell them about this message from God? I didn’t want to burst their bubble. They had gathered for victory. My heart knew it was going to be a loss.

Since then, some have asked how I could lose a Republican seat, in a predominately Republican county. Even my Democrat friends, who had voted Republican for the first time in their lives, wondered.

I knew. My plan was not God’s plan.

I went through years of being very ill. In 1998, a doctor said I should go to bed as I would never get any better.

God had a better plan. God needed me well. He needed me for Brenna’s sake. God needed me for this day, for this trip.

I did not know that God’s plan meant losing my only beloved daughter. My heart aches for her every day, but I know that she would be happy that her mom has at last reached the place where I am again listening to God’s plan and not trying to do things alone and in my own way.

I have placed this trip into God’s hands and myself into his keeping. God sent a wonderful Taskmaster to take care of the logistics of the trip and arrange a team of people who could do what I cannot do.

When we truly let go and let God have charge, we discover that while God’s plan may also be difficult, he will make a way for all things to work together for His good.

So, when you face a major glitch in your life, know that our loving God cares for you and he has a better plan.

 

 

 

People are humans, not vegetables.

People are humans, not vegetables.

When doctors claim someone is in a vegetative state, what vegetable are they referring to? For those of us who have sat by the bedside of a loved one with a brain injury, we must stop the medical professionals in their tracks as soon as they mention the term vegetable. The use of this ugly word seems to give the medical profession the "self-license" to treat the patient as an inanimate object, shuffling them from one inept facility to another.

After Brenna first experienced her anoxic brain injury, the term persistent vegetative state (PVS) entered our world. I knew what the doctors willingly chose to ignore. Brenna was NOT PVS. She was not brain dead and her tests proved that. Her EEG was pretty good.

Brenna did not die as a result of her brain injury. She died as a culmination of multiple institutional acquired infections, poor diabetic protocols, prescription "errors", untreated broken teeth, potassium imbalance, and inept care for a person with a brain injury in most of the facilities where she was unfortunate enough to be.

I spent many hours by Brenna's bed, searching for answers, searching for information the medical professionals chose to ignore and deny. I discovered this 1996 study in the British Journal of Medicine. Why hasn't the United States government funded studies similar to this?

If we as a nation are going to stop using this archaic terminology for human beings, the first step must be with those of us who have seen the miracles of victory over hypoxic-anoxic injuries.

http://www.bmj.com/content/313/7048/13.full
Misdiagnosis of the vegetative state: retrospective study in a rehabilitation unit

Psalm 116: 8, 9

Psalm 116: 8, 9

8 For you, Lord, have delivered me from death, my eyes from tears, my feet from stumbling, 9 that I may walk before the Lord in the land of the living.

Every day I read devotionals to Brenna from a little book called Jesus Calling. This verse became a frequent theme in our lives as we journeyed to the hope of recovery. I explained the verses to her as I believed they applied to her.

My precious Brenna joined hands with Jesus eleven months ago today; and today, she truly walks before the Lord in the land of the living. Although my heart aches at the loss of her presence, I cannot be bitter at God for to be bitter would be to dishonor my God who gave me the blessing of my only child. I would not have missed her life for the world and am ever grateful to God for those moments we shared.

 

**********

 

Three weeks from today, in Brenna's honor, I will begin the journey to Washington, DC, to bring the message that how we treat and accept people with brain injuries must change. I know that Brenna is happy, knowing at last that her mom is on the way, and I know that she is happy that the Taskmaster has made this trip so much easier for me as he created a team to remove the burden of logistics off my shoulders.

 

Let the dialogue begin. To God be the glory.