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.
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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