A Christmas Miracle

Today I came home and found this message of joy on my Facebook. I wanted to share this with those who have followed my journey over the past few months. When the medical profession gives up, it is comforting to know that God never gives up, and that families are not giving up on those they love who suffer an anoxic brain injury. Mary Beth asked the question that so many of us ask in a time of crisis, "Why us." I asked it myself so many times in my life, first with breast cancer at a young age, then at Brenna's diagnosis with type I diabetes, and again when she suffered her brain injury.

Message from Mary Beth Carney and used with her permission.

On March 6, 2011 my husband of 43 years suffered loss of oxygen for 8-10 minutes due to cardiac tamponade after open heart surgey. What he has is called anoxic encephalopathy. Jim has trouble with long and short term memory, Gait ataxia (this causes difficulty with his walking), difficulty with his speech, along with bowel and bladder problems.
,
We have had a really tuff time dealing with this. I do a lot of crying and praying and yes even yelling at Our Lord, why us.

...This past Christmas I prayed very hard for one thing--A Christmas miracle for my husband.

Christmas came and went without any signs and then on the morning of December 26th I saw a miracle and for the 1st time in a very long time I had tears of happiness. No, Jim did not have a full recovery BUT what he does have is a miracle. He is standing up from chairs and beds without help. walking around the house and even checking doors and windows before we go to bed. carries on small conversations and his voice really is strong and clear at times.

I told the Father, Son and Holy Spirit that if I received our miracle that I would shout it from the roof top. I am sending this it to every newspaper etc that I can think of to evangelize that miracles still do happen and that we all need to trust in Our Lord for he is good.

Mary Beth Carney

As I sat in church today and listened to the guest speaker talk about all the "cliffs" our country has faced and survived and how each of us should do our part to make things better for our world in which we live, God impressed upon me again that I must be out in public speaking about the issues that I learned while dealing with Brenna's brain injury.

When my heart cries out, "Why?", I know the answer. God has a job for me to do. He is not through with his plan for Brenna's life. It is up to her mom and those who loved her to complete the mission.

This week I took the first step to establish Brenna's Hope Foundation by filing the papers with the Idaho Sec. of State. They gave me the information I need to file for 501(c)(3) status with the IRS so donations can be tax deductible. I have been working on the web site in her honor. I will need people to work on events to raise funds for research for rehabilitation and recovery of those like Brenna who suffer an anoxic brain injury. I am notifying churches that I am available to speak on "Thy Will be Done" and what that means to each of us. God isn't done. I must move forward with his will for my life.

As a good friend has said to me so many times, "Give up everything else before you give up hope."

This holiday has been so lonely without my little girl and my heart aches for her every day, but I know that she wants her mom to continue to share the message that people are not throwaways in God's eyes.

Pam

MUD

People who suffer hypoxic-anoxic brain injuries are not MUDs. MUD means maintain until death.

People who suffer hypoxic-anoxic brain injuries are real live human beings who deserve a much better chance to live than many in the medical profession give them today.

Let me tell you about my friend, Mack. I spent Thanksgiving 2012 with Mack and his family. In April 2011, doctors mistakenly identified Mack as being in a "permanent vegetative state". Doctors gave the family no hope. They said he would never walk or talk again. He would just be a vegetable.

Kelly, Mack's wife, had to fight hard against a system that refused to offer him the best medical opportunities available to others. She was persistent. She never gave up. She still never gives up. Mack was not a MUD but the medical professionals seemed to treat him that way.

When God created man, he did not create man to look or be a vegetable. He created man in God's own image. Mack is a man of God. He is not a vegetable. He is not a MUD.

When I arrived at Mack's house in November, he welcomed me into his home. He assisted Kelly with lunch, even showing her that YES, he could slice tomatoes with a knife.  In the mornings, Mack fixed a wonderful breakfast, fit for a king. He made sure that his guest had plenty to eat. He made sure that my little companions for my journey, Tippy and Gibbs, ran and played in the back yard. He made sure I knew how welcome I was as a new member of their family.

I spoke with Mack about some of my dreams, dreams to make things better for people with hypoxic-anoxic brain injuries, dreams to make things easier for caregivers. As a trained welder, Mack, understood what I wanted and even suggested ideas of his own. Even though he can no longer work as a welder, he was able to think of ways to better my own ideas.

Mack is one of many patients who deserved a better chance than doctors were willing to give.

This country can and must do better. We cannot in good conscience continue to write off people with hypoxic-anoxic brain injuries as if they have no value and never will.

I wonder sometimes what God makes of all these decisions in hospitals that condemn people to death, people that have a chance to live and recover if only we gave them a better chance.

I wonder sometimes what God makes of these medical decisions that refuse to accept a patient as a human but instead delegates them to a vegetable garden as just another veggie.

Too many times, patients with hypoxic-anoxic brain injuries are treated as if they are only MUDs. Brenna was too often  treated as a MUD by uncaring staff who did not believe she deserved better.

Mack is recovering in spite of a dire prognosis of a skeptical medical profession. He is recovering by the loving hands of his wife Kelly who is like the energizer bunny. She never gives up. She keeps on plugging for Mack, knowing him for the wonderful, precious human being that he has always been.

Brenna's Hope Foundation

At last! The initial paperwork to establish Brenna's Hope Foundation has been filed with the Idaho Secretary of State.

Brenna's Hope Foundation is more than a dream. The foundation is becoming a reality.

Now, to get the paperwork ready to gain status with the IRS. I hope to find someone with accounting experience who will volunteer time to help that process along.

Keep me in your prayers as I work toward this goal. Those who have suffered hypoxic-anoxic brain injuries must be remembered by those of us who love and care for them.

Brenna's life and her death must not be in vain. The foundation is in her honor but to God's glory.

Thy will be done

A blessed Christmas to all.

Sunday morning at church, God impressed upon me a direction I need to go now that I am home from my trip. Not only does Brenna's Hope Foundation need to get established, God instructed me to contact local churches in southern Idaho about my journey and let them know I am available to speak. Hopefully, I can get someone to go along with me to video at least part of my talks.

Last night I attended Christmas Eve services with my friend Sheila. We went to the same church where Brenna attended her last Christmas Eve service. At that service, Paster Joe used Charlie Brown's Christmas (with Linus) as a sermon illustration. After Christmas, Brenna found a Charlie Brown's Christmas animated decoration and wanted to give it to him. She was too shy to take it. After she became ill with her brain injury, I delivered Charlie Brown and Linus to Pastor Joe. As I left the service last night, I reminded him of who I was. He said he has the decoration sitting in his office and has invited me to come visit with him about my amazing journey this fall and he wanted to hear Brenna's story.

As I sat in the service and we repeated the Lord's Prayer, I was reminded again of the importance of "Thy will be done." To me, that is the most important part of the prayer. I have tried to do some things my way and forgotten to ask God his direction. God has impressed upon me that I must let him be in charge to do things his way. As a special friend recently told me, I need to learn patience. God has jerked me up by the back of the neck on this issue. God puts people in our lives for a reason and we need to wait upon him to understand his direction completely. I do know that God wants me to use "Thy will be done" as a message. I covered this in Condemned to Die. When we ask God to take control of anything in our lives, we must back off and take our hands off of it. I am making an effort from now on to do just that. A daily reminder to myself that God is in control of every event and things only get messed up when I jerk things back out of his hands.

Sheila and I came home to pizza and after she hooked up the Blue Ray to Brenna's big TV, I drug the recliner into the bedroom for her, where we had pop corn and chatted as we watched her favorite movie, The Nativity. Her son-in-law's late text reminding her to be at their house by 8:30 this morning had no affect on us. We didn't go to bed until 3:15 this morning. I told her to text him back that they couldn't start without her as she had the bacon.

Sheila has arrived at the kids and I am preparing to take Gibbs to Life-Care Treasure Valley nursing home where Brenna resided so long. The residents watched Gibbs grow up in their midst and I believe they would like to see him again. I had to get him a new sweater yesterday as he chewed his way out of his "Mama's Tough Guy" hoodie. Tippy is rejoicing in being home again and roaming in her yard. She roots in the garden for freeze dried potatoes and doesn't want to come in. She is getting old and I worry about her being outside so long in the cold. But, never fear, Gibbs is her best friend and when I send him to get her, he races across the yard, gives her a bump, then races back to the porch to show her the way.

As 2012 becomes history and a new year begins, I want you all to know that this Mom on a Mission is alright. It does hurt to be without Brenna and I know that each year will be difficult without her. However, I know that Brenna would want her mother to move forward and do what God wants me to do to further the mission of brain injury awareness. "Give up everything else before you give up hope." Those are the wise words of the person I dubbed The Taskmaster along this journey. He has been a strong support as I traveled over 8000 miles in three months. I could not have completed the journey without his concerns and keeping me on track along the way. I am grateful.

Thank you all for your love, encouragement, and prayers.

Excerpt from Condemned to Die:

Forgiveness

Let all bitterness and wrath and anger and clamor and slander be put away from you, along with all malice.  Ephesians 4:31

My father was a preacher. I spent my growing up years on the second pew on the left, sitting by my mother. My older brother sat on the front pew. Daddy was an old-time preacher, loud and long-winded. No microphone for him. I always suspected that he learned to project his voice in his days at Trevecca Nazarene School of Theology in the early 50’s.

          I can’t remember a sermon that lasted less than 45 minutes. The heat of the day, the hardness of the seats; when Daddy was preaching, none of that mattered. In my childish opinion, Daddy learned these long sermons from Trevecca and my discomfort was all their fault. And, as most preacher’s kids do, when Daddy got started preaching, I tuned out.

          When Brenna grew old enough to ask about the granddaddy she never knew, she was enthralled with his commentaries. She wished she had the rest of his books to study. While those were long gone, she began to grow her own stack of books on faith and peace and hope and the love of God. She asked me many questions about her precious Granddaddy’s sermons and his beliefs. While my father died long before Brenna was born, she seemed to have a natural affinity for him. She would always ask, “Mom, would Granddaddy have loved me?” “Yes, he really would. He always wanted a granddaughter and you would have fit the bill.” She wanted to live her life in a way that would please Granddaddy, but most of all she wanted to please her God.

          While I may have tuned out my father’s sermons on forgiveness and remembered little he said, Brenna’s search for knowledge and her insight brought me to heel. She would read her Bible and think her deep thoughts. Then, when her thoughts were gathered, she brought her views to me.

          When crises happen, many parents and family members wonder about the condition of the heart of their loved one. Is she alright with her soul?  If she died today, where would she go? For many of us who have lived and breathed fire-and-brimstone sermons that scared us away from hell, we wonder about the new generation. What are they thinking?  Are they ready? What is the condition of her soul? With Brenna, I knew.

[For the rest of this chapter, purchase Condemned to Die: Ask me how. Tell me why. at Amazon.com or Barnes & Noble online. Available in Kindle and Nook]

Mom on a Mission is HOME

Three months ago today, I set out on my journey across the United States, covering 21 states, five brain injury facilities, and meeting families who daily walk the journey to recovery from hypoxic-anoxic brain injury.

I spent time with Senator Crapo in Washington, DC, discussing with him issues that need to be addressed for patients with a brain injury.

I spent an enjoyable time with Mr. Larry Larocco, a DC lobbyist, talking with him about the possibilities of the future for Brenna's Hope Foundation.

I have been blessed by the families I met on this journey. I fell in love with the patients who are working so  hard to recover with the help of their loving families.

I spent time with friends of long ago who were surprised to see me show up in their neighborhood. It was so good to renew those friendships.

I was able to visit with cousins I hadn't seen for many years. I love you all.

Thank you all for the invitation into your homes and your lives. I am grateful for all your prayers along the way and your concerns when Waldo's Mom  (me) seemed to disappear.

Abby (the motorhome) hummed along for 8106 miles without any major problems. One of these days I'll get my thoughts together for a new book about the trip, including the story of when Abby locked me IN the motorhome. Abby has had a bath, after the snow and muck of Ely, NV, and is now in storage just down the road. She has earned a rest.

Tippy is excited about being back at home in her territory, eating freeze dried potatoes in the garden. Gibbs can't seem to stop racing around the yard, up and over the porch, and through the house.

I am glad to be back home, ready to do the work to make Brenna's Hope Foundation a reality. I worked on papers last night and after Christmas, I can pick up the papers at the Sec of State to complete the first stage of the process.

From the CDC, we know there are 1.7 million new TBIs every year. What we do not know is how many new hypoxic-anoxic brain injuries occur each year. While the ICD-10 code is more specific about TBIs, the code for hypoxic-anoxic is less definitive. I don't buy the argument that it can't be done. Yes it can. We as family members can make it happen.

In Brenna's honor, change must come. Please join me on this reach to change.

Questions to Ponder

Why are physicians who are so quick to DX "persistent vegetative state" for patients with an acquired brain injury, so reluctant to discuss positives with families?

Why CAN'T we begin using hyperbaric oxygen therapy (HBOT) for patients with hypoxic-anoxic brain injuries in the early stages?

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?

At what level of a brain injury does ending the life of the patient 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 managers to help families make decisions regarding rehabilitation and recovery?

When does dumping vulnerable 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?

Home for Christmas

Three months ago, I began a long journey across the United States with Brenna’s two dogs, Tippy and Gibbs. God has blessed us with safe travels and good weather.

Along the way I have met inspiring families who are dealing with different levels of recovery of anoxic brain injuries. I have visited brain injury rehabilitation centers, crossed 21 states, and by the time I get home, I will have driven over 8000 miles. My friends at home and across the country have kept us in their prayers. I have been blessed.

As I traveled, I was fortunate to visit friends of long ago and renew our connections. God has blessed me with their friendship.

I have made new friends who have accepted me as family. God is good.

In a few hours, we begin the last leg of our journey, this time to return to Idaho. We will be home for Christmas. Please keep us in your prayers.

I will be resting until after New Years’. Then begins the task of setting up Brenna’s Hope Foundation. As I work on that important goal, please continue to pray for me that I will make the right decisions. I will also be compiling all the information I have gathered along the way to give a report to Senator Crapo who graciously allowed me time in Washington, D. C.

May God bless and keep you in His loving care. May you be blessed with His presence as we honor the birth of the King.

Pam, Tippy, and Gibbs

http://condemnedtodie2012.blogspot.com/

International Classification for Disease

The 11^th edition of the International Classification for Disease is in process and due out in 2015. The organization responsible for this code and its changes is the World Health Organization (WHO).

For those of us who have experienced the journey with hypoxic-anoxic brain injury, we must contact WHO and insist that hypoxic-anoxic brain injuries be considered in classifications as the organization does TBI. The change must begin with us, to raise awareness of this critical need, not just in the United States, but around the world.

http://www.who.int/classifications/icd/en/

“The International Classification of Diseases (ICD) is the standard diagnostic tool for epidemiology, health management and clinical purposes. This includes the analysis of the general health situation of population groups. It is used to monitor the incidence and prevalence of diseases and other health problems.

It is used to classify diseases and other health problems recorded on many types of health and vital records including death certificates and health records. In addition to enabling the storage and retrieval of diagnostic information for clinical, epidemiological and quality purposes, these records also provide the basis for the compilation of national mortality and morbidity statistics by WHO Member States. It is used for reimbursement and resource allocation decision-making by countries.

ICD-10 was endorsed by the Forty-third World Health Assembly in May 1990 and came into use in WHO Member States as from 1994. The 11th revision of the classification has already started and will continue until 2015.”

With the help of my wonderful online family who never fails to come through when I ask for help, I have compiled the following list of known causes for hypoxic-anoxic brain injuries. Some of these could possibly be combined but this is a start to making a change that will affect all people who suffer a hypoxic-anoxic brain injury.

Proposed changes to ICD-10

Hypoxic-Anoxic Brain Injury

Causes

     Asphyxiation

Asthma

     Chemical Exposure

Carbon Monoxide Poisoning

Divers

     Drowning (near)

     Drug Overdose

     Epileptic Seizures

     Heart Attack

     Meningitis

     Oxygen toxicity

     Pinned Under an Object

     Repeated Concussions

     Shaken Baby Syndrome   

     Smoke Inhalation

     Stroke

     Sudden Cardiac Arrest

     Suffocation

     Surgery  

     Toxic Gases

Unacclimatized exposure to high mountainous environments

 

    

    

 

 

Schedule

I am not lost. After leaving DC, the Taskmaster insisted that I take a few days off for total relaxation, turning off the computer and the phone. I was totally exhausted. He knew I needed the rest.

Today I was with the Culpeper family in South Carolina. This has been a great day with a wonderful family. Mack is an awesome miracle of  healing, not the vegetable the doctors said he would be. We had great conversation. Mack made sure I ate right, rested, and saw to it that my furry babies had complete enjoyment of their huge back yard. I was glad to be part of this family for this holiday.
For those I will see on the southern route, here is my revised schedule. Because I have become so tired, I have cut out the visit to locations in TN. Those will be for another time.

Atlanta, GA              November 23
Ft. Benning, GA       November 24
Moulton, AL             November 25-29
Florence, AL             November 30-December 1
West Monroe, LA    December 4
Ft Worth, TX           December 7-9
Lawton, OK             December 10
OKC                         December 11

Thank you all for your love, encouragement, and support. I pray you all had a blessed Thanksgiving. I know I am glad to be a part of your families.

NotesSenator Michael Crapo

This day belonged to Brenna Deshawn Dowd. In her honor, I spoke to her senator. Together, we can and will make a difference in how people with a brain injury are treated. One step at a time. One moment at a time.

 

This was a successful  day with Senator Crapo. The 15 minutes were well spent. Between his staff in Boise and the Taskmaster, my presentation was clear, concise, and impressed the Senator. This is a first step. He is supportive of the recommendations and willing to work with me on making changes. He was pleased to see that one of my recommendations regarded HBOT. This is something he is familiar with and, when he saw that was on my short list, he smiled. 

PAMELA DOWD NOTES FOR MEETING WITH SENATOR CRAPO

NOVEMBER 14, 2012 

NATIONAL RECITATION OF IMPORTANT FACTS ABOUT TBI

Each year, 1.7 million people face a traumatic brain injury,  and the numbers of hypoxic-anoxic brain injuries are uncounted.  On average three TBIs occur each minute. As a comparative number, 226,870 women will be diagnosed with breast cancer in the United States in 2012. TBI incidents are 7 times higher than breast cancer.

Besides the human impact there is a staggering economic impact. Nationally, the estimated costs in medical care and loss of productivity is $76 billion annually. For Idaho, the average 19,000 TBI new patients annually translates to approximately one half billion dollars in medical costs and lost productivity to its citizens.

Let me take a moment to help you understand the major causes of TBIs.

The leading causes of TBI are:
     • Falls (35%)
     • Motor vehicle-traffic crashes (17%)
     • Struck by/against events (16%)
     • Assaults (10%)

As I outlined in the letter I gave you in Boise on August 20^th.I am a mom on a mission to learn all I can about other families and medical professionals and their experience with TBIs.

I left Idaho on September 22 in my 20 year old motorhome. To date, I have traveled 3983 Miles, covering 11 states, 7 1/2 weeks on a self-funded trip.

CONTINUATION OF TRIP (MILES AND DURATION)After leaving Washington, DC, I have 4112 miles to go, crossing 13 states, visiting families and patients in five states, and one wheelchair manufacturer.

I have visited five TBI facilities in Nebraska, Wisconsin, Michigan (2), and Indiana.

The five facility’s I have visited, to date, range in size from 45 beds to 110 and provide outpatient and inpatient therapies.

These facilities ran the gamut from non-profit to for-profit.

Of the five brain injury rehab facilities I visited, Madonna Rehabilitation Hospital in Lincoln, NE was the most inspiring.

Madonna Rehabilitation Hospital is state of the art, accepting patients from 30 states and works with any state Medicaid that will work with them. Everything in the facility is geared toward returning the patient to a home environment, where families are an integral part of the recovery process.

Not only does Madonna Rehab work with TBI patients, they provide rehabilitation services for those who suffer hypoxic-anoxic brain injuries. The staff is complete with dentists, neuropsychologist and neuro-ophthalmologists, and counselors to assist families with each step of recovery.

Recommendations  

1. Support reauthorization of Traumatic Brain Injury (TBI) Act, H.R. 4238. The act requests $37 million dollars for projects. I respectfully request that in this process, a portion of the funds granted be focused on hyperbaric oxygen therapy (HBOT)as part of the protocol for hypoxic-anoxic brain injuries.

2. Request that the Secretary of the Department of Health and Human Services revisit the rules on Medicare regulations regarding length of time allowed for rehabilitation and recovery of persons who suffer a brain injury.

Senator, it is apparent that TBIs are part of a not so hidden modern American epidemic.

3. I urge that you consider forming a study committee of TBI health care experts, affected groups and organizations that have shown an interest in reducing the impact of TBIs on their business or industry (such as the NFL and NASCAR) and brain injury patients and their families. This public/private committee should look at reducing the number of TBIs occurring in the US and also offer solutions to improving the diagnosis and treatment of all brain injuries.

I make this recommendation because of what appears to be a lack of coordination of resources and research, and communication amongst the brain injury constituencies.

Such an effort will also bring greatly needed attention to this issue and should be a part of the larger discussion of the necessity of cooperation between business, industry and the medical community.    

 

Pondering

I have traveled almost 4000 miles, crossed 8 states, visited 4 levels of brain injury rehabilitation facilities, and am sitting 390 miles from DC right now. On November 14th, I will meet with Senator Crapo to discuss what I have learned on this journey. Top of the list will be the concerns of the families with brain injuries who have participated in Countdown to Congress.  I will include the concerns people have posted on luvurbrain.com as well as what I have learned at the facilities.

Yet, my mind still wanders at times. I think of my little Brenna who was not given the chance to recover and live. She deserved more than the inhumane treatment she received in many of the facilities where she was unfortunate enough to land. I should have been able to have her at home.

Today I walked into a Flying J where we had been before. In the convenience store, I stood in the place where she stood a few years ago, talking to a young trucker who had bought his mother a new front load washer and dryer for Christmas. She stored it in the barn  until her others wore out. He was taking time off to install it as he wanted the best for his mother. Brenna said, "Mom, I want a husband like that, one who loves his mother and is good to her." She never got that. Then I walked into the restaurant and passed by the table where she sat, working on a class assignment while I fueled up. My heart broke.

And I think of other things.

While traveling all these miles, the mind has time to ponder. My question is: For the person in the hospital or nursing home with a brain injury, does DNR really translate to MUD...Maintain Until Death. And that is ALL they do, never try to help the patient recover????

The mind can't help but think of these things. I never would sign a DNR for my precious Brenna. She was getting poor treatment in too many places already. I didn't want to give them another excuse to ignore her best care. She wasn't a MUD.  She was a human being, the joy of her mother's life.  Always and ever, I love my daughter, Brenna Deshawn Dowd.

HBOT

Today I visited a hyperbaric oxygen therapy center in South Lyon, MI. This is an FDA approved facility that has given treatments to my young friend, Adam Sanderson.

Adam is the son of Steven and Jamie Sanderson of Sault Saint Marie, MI. Adam suffered his anoxic brain injury 12 days before my beloved Brenna. He has struggled in a broken health care system to recover. Adam came to a nursing home almost 5 hours from home, to receive these valuable treatments. Adam is progressing.

I am convinced that HBOT is critical to the recovery of hypoxic-anoxic brain injury. After talking to the owners of this facility, I understand better how important it is for patients, whose injuries are caused by reduced oxygen or a complete shutdown of oxygen, to receive HBOT in the very early days of the injury.

To me, this makes sense. When the brain injury is caused by reduced or lack of oxygen, why do hospitals avoid using HBOT when a patient is first admitted with a hypoxic or anoxic brain injury. Wouldn’t increasing oxygen to the brain be healing?

The owners of this facility have a young daughter who suffered an anoxic brain injury after a viral infection. After being told their 9 year old daughter would die, the mother sought HBOT for her daughter. The family had nothing to lose. They fought to get her into HBOT. They fought to get insurance to pay the $74,000 upfront money needed. They won.

Today the young lady is not only alive. She is dancing again. She just got her driver’s license. She is a success. Let there be more. Let this country take a serious look at HBOT for healing brains.

 

 

 

Detecting Consciousness Levels

Please check out this site. You never know when someone you love may have a brain injury. I KNEW Brenna knew I was with her in the early days. Her BP changed when I talked to her. A nurse told me to stop talking to her. Brenna was responding to mom and it was the only way she had to tell me.

http://www.ctvnews.ca/health/consciousness-scanner-giving-hope-to-brain-trauma-patients-1.995767

Clearview Hospital-Head Injury Rehabilitation Center

On Monday, October 15th, I stopped at this great little hospital in Juneau, WI.

Now, one might ask HOW I found this hospital in a town of less than 3000 people, a hospital that is on the cutting edge of brain injury rehabilitation in Wisconsin.

It began like this.

Sunday morning I was leaving the KOA north of Madison. I decided to ignore the voice of the Garmin and strike out across country on state and local roads. As I entered a little town called Columbus, WI, the first thing I noticed was a big church. It was 11:30 and I thought about slipping in to the last few minutes of church. But I didn't. There was no place to park this big motorhome. The parking lot was filled and both sides of the road had cars parked bumper to bumper.

I wandered on through town and the pouring rain. I passed a small, home town restaurant, The Apple Tree Family Restaurant. It too looked packed but at least I could park on the street.

When I went in, the only place left to sit was at the counter. Usually, I like to sit at a table. But God had other plans. Just as God sent me to Columbus, he sent me to the counter.

A local woman came and sat down by me. Soon she looked at me and said, "I thought I knew everyone in town. I don't recall seeing you."

There began a conversation on brain injury. Marsha was a retired nurse. She told me about the hospital in Juneau and insisted that I just HAD to go. She said she had almost not come into the restaurant because of the rain. A voice told her she had to come in. Just as God sent me to Columbus, he sent Marsha to sit at my side.

Marsha was right. I spent the night in Watertown visiting with friends, then journyed to Juneau on Monday.

The hospital is one of three sub-acute brain injury certified centers in the state of Wisconsin. I spoke with the director Jackie and her assistant Dawn. I knew that we not only needed places like Madonna Rehabilitation in Lincoln, we desperately need centers like this, especially for our more rural areas.

God didn't send me on a detour on Sunday. God doesn't do detours. He sent me where I needed to be in the fulfillment of his plan for Brenna's life. My job was to be still, listen to his calling, and be open to what he wanted me to do.

Jackie and Dawn were excited about the sign on the motorhome. Had they had a sign for their hospital, I would gladly have put it on the side. They want people in Wisconsin to know these sub-acute brain rehab hospitals exist. I was blessed by their willingness to talk and share with me.

Sunday was God's day to get me to a place I needed to be. Monday was the fulfillment of his direction.

On the Road

I am at a McDonald's in Newton, Iowa. I needed to find somewhere to connect to the Internet. Contrary to the hype of the salesman when I got my new phone, it does NOT connect anywhere in the nation.  I haven't been able to connect, using it as a modem, for over a week. At RV parks, when the office is closed and the modem or router shuts down, no way to connect.

If the phone doesn't get a signal, and it apparently doesn't across most of WY, NE, and IA, I can't collect emails or call out.

I know the lack of connection has caused some to worry about me. I am alright. The motorhome is running great. I am slowly crossing the US, stopping along the way to see the sights.

Sunday, I went to Madison County, IA, to see covered bridges. The first one I saw was where Clint Eastwood and Meryl Streep did their movie together. Sadly, someone saw fit to burn down the house she used for her part in the movie. This is also the birthplace of John Wayne. I had no place to park the motorhome so didn't try to get close.

From there, I went to Avita State Park for a beautiful night on the Avita Lake. Deer met us at the entrance. We listened to the leaves fall to the ground. They make a happy sound as they fall, meeting their companions for the lasat hurrah before winter.

It is a beautiful day, no clouds, no wind. I will be heading to Davenport later.

The Taskmaster has promised that soon I'll get into territory where my phone WILL work all the time. I hope he is right. He usually is. I have much to do and need my connections.

Madonna Rehab in Lincoln, NE

Madonna Rehabilitation Hospital

5401 South

Lincoln, Nebraska

 

On Friday I was graciously given a tour of Madonna Rehabilitation Hospital in Lincoln, Nebraska. I was treated to two hours of an amazing journey through a rehabilitation dream.

For 16 months I dreamed of a facility like this for Brenna. As I listened to the Director of Rehabilitation explain their philosophy, I knew I had found a hospital that most fulfilled the dreams I dreamed for Brenna.

When I saw the enclosed play/therapy courtyard for the kids, where kids could play and receive therapy without danger of getting hurt, I wished that for every child with a brain injury.  Their class room area was geared to help students relearn the skills they would need when they go back to school. Familiarizing patients to the work force. Robotics for the extremities. So many things that would be a positive for brain injury rehabilitation.

It isn’t enough just to HAVE these things. Madonna has done their best to make all things resemble the environment to which a patient may return some day. Even the cafeteria has been redesigned to resemble places a patient will encounter: a 50’s style area with booths, a bistro section, and an internet café. I was awed and inspired.

This hospital does research on practical therapies to see what works and what doesn’t, what changes to equipment would make the equipment more affordable to other hospitals.

They are doing aroma therapies. From their observations, using mint stimulates and cinnamon relaxes an agitated patient. That was good to know.

I never knew this hospital existed. Had I known this hospital was here, I would have taken Brenna in a heartbeat.  I would have moved heaven and earth to get her to Nebraska.

I have a dream now of a hospital like this for Idaho, Wyoming, and Montana that focuses on brain injury rehabilitation: a hospital that will not turn away a patient with a hypoxic-anoxic brain injury, a hospital that understands that healing the brain is a long process, a hospital that believes family involvement is a critical piece to the puzzle of recovery.

I thank God for leading me to Madonna. It is too late for Brenna, but it is not too late for others who come after her. Brenna would want her mother to do what would be best for others who encounter the same obstacles she did.

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