Mama's Dream

Mama’s Dream

Be careful for nothing; but in everything by prayer and supplication with thanksgiving let your requests be made known unto God.         Philippians 4:6 (KJV)

During my sixteen months by Brenna’s side, I had time to think of ways rehabilitation and recovery for a patient with anoxic/hypoxic brain injury could be so much easier for a patient and the family. Before Brenna became ill, she had found a corporate retreat that was ideal. She wanted it to give Type I diabetics and their families a place to come for respite. She was just $3.5 million short.

     I frequently checked the listing on her property. I described the property to her: seventeen bathrooms, eleven bedrooms, an indoor pool, a small, private lake, and a runway. We were still short on the millions needed, but it was all right to dream.

     I talked to her about the fresh air that would benefit patients with anoxic/hypoxic brain injury. I talked about the fish in the lake, the deer on the property, and how Tippy would love to chase the wild turkeys. I talked to her how good it would be for her and others with anoxic brain injury to have such a positive place to recover. She understood.

I dream of positive doctors who have a vision of possibilities, not a group of negatives ninnies wearing blindfolds. I know the possibilities. All families with a patient with a brain injury know. If no one works with the part of the brain that is healthy, trying to reconnect and re-pattern the brain, there cannot be progress. There is no excuse in today’s society for wasting a brain.

I dream of a facility where the patients can go outside and enjoy the fresh air and nature. I dream of a place where the rooms are happy, not depressing shades of brown. I dream of a place where the patients’ pets can stay and be a part of the recovery.

I envision a place where family members can participate with recovery, a place where an interactive computer would keep the patient in touch with family members who cannot be present. To me, these are important to recovery of an anoxic brain injury.

     I dream of software where a patient’s face can be programmed onto an image so the image appears like the patient. I dream of software that shows patients how to move their hands, feet, and heads. I dream of software that shows patients how to walk and how to talk.

I dream of lightweight sinks that simulate a real sink, a sink where patients can learn again to wash their hands.

I dream of a place where all patients have access to a LiteGait to learn to sit, stand, and move their feet again. I dream of every brain injury patient having access to the Quadriciser that re-patterns the brain by use of repetitive motion.

I dream of a place where everyone has a power-lift chair and has the opportunity to sit comfortably as they did at home.

I sat by Brenna’s bed and dreamed all these things. I shared the dream with her. She understood. She smiled.

     If I had a facility, family members would not only be encouraged to learn how to take care of the patient, but they also would be required to participate for acceptance into the program. Patients with family member involvement have a better chance at recovery.

     The medical system tosses obstacles in the way to keep patients on the health care assembly line. Family members are intimidated into keeping their loved ones in a failed system that offers no hope and too many chances to die.

When I begged to bring Brenna home, the doctor insisted that I would need five nurses and five RTs around the clock to care for her. He snidely asked if I had that kind of money. I was spending ten to twelve hours a day with Brenna and knew I could take care of her. I just needed someone to show me how to care for her trach and PEG.

Case managers were no help in finding resources to bring her home. Their role was to slide Brenna into the next level of care on the health care assembly line. I want a facility where the optimum is what is best for the patient’s recovery and return home.

     I fought for sixteen months to bring Brenna home. I knew how to care for her. At NH2, I learned to clean her trach and change the inner cannula. I tightened the trach collar when someone left it too loose. A loose trach collar could cause serious damage to Brenna’s throat.

I cleaned her PEG and changed her formula bottles. I gave her meds through the PEG tube, cleaned her when she was wet, and sometimes changed her clothing alone, just to show myself that I could do it.

I monitored her BG levels. I checked her temperature when nurses did not understand that her hot body indicated a rising temperature or a problem with her diabetes. Any family member can learn these skills.   

I found a facility in Galveston, Texas, that sounded positive. It had an interactive computer system where families and patients could keep in touch on a constant basis. I liked that. The problem for us was that the patient had to be ambulatory.

Anoxic brain injury patients need some place to go in the early days, a place with consistency that is focused on re-patterning the brain. That is Mama’s dream.

Brain Injury Hospital Proposal Support

September 10, 2013

To whom it may concern:

Four years ago, my only child, Brenna Deshawn Dowd, lived a normal life, pursuing her goal as a criminal justice major. On May 25, 2010, she was four classes away from her Masters in Criminal Justice Administration, with all the hopes and dreams of being a voice for young people and children who had no voice in the justice system.

She suffered a concussion as the result of an automobile accident in April 2009. Little did we know how critical a concussion could be. She began to lose her depth perception and proudly held that knowledge to herself. When I discovered her declining vision, I insisted on her seeing a vision specialist. Twenty-four hours after the fourth eye repair surgery, my daughter was comatose, unresponsive.

Thus began our journey through a health care system that is, at best, inadequately responsive to the medical and rehabilitation needs of a person who suffers a hypoxic-anoxic (HAI) brain injury. We were given no hope, yet Brenna knew me from the very beginning. She was not brain dead. Her brain stem was healthy. She still had at least 50% of her brain functioning and the neurologist said it was too early to assess damage until at least 8 weeks. I learned through this journey that few in the medical profession are knowledgeable about brain injury rehabilitation and recovery.

As a mother who approached numerous rehabilitation centers on Brenna’s behalf, I learned the discriminatory practices against those who suffer HAI. I have learned that while the Federal government’s intent is that HAI patients are to be included in the same therapeutic opportunities as TBI, that intent has not trickled down to rehabilitation centers.

For your benefit, I am attaching a recent letter from Linda C. Degutis, DrPH, MSN. Director, National Center for Injury Prevention and Control Centers for Disease Control and Prevention. Her paragraph four affirms the government’s intent to include HAI and TBI on the same levels.

“For the purposes of this section, the term “traumatic brain injury” means an acquired injury to the brain. Such term does not include brain dysfunction caused by congenital or degenerative disorders, nor birth trauma, but may include brain injuries caused by anoxia due to trauma.”

Brain injury rehabilitation is perhaps the last medical frontier, one we cannot afford to ignore. We know so little about this magnificent organ and thousands of patients have so much to gain from a hospital whose sole focus is on brain injury rehabilitation.

The latest figures of the CDC and NIH reports 3.5 million new TBIs every year. This is a critical increase over the previously reported 1.7 million new TBIs per year. HAI patients continue to be uncounted. With this ever increasing number of brain injuries, the numbers of facilities available in the United States are critically limited. In this great country of ours, there is room for more. For the sake of future generations, we must move forward in establishing more brain injury rehabilitation hospitals.

Please give Dr. Senno’s proposal serious consideration for the future of all patients with a brain injury.

Sincerely: 

Pamela G. Blaxton
Founder-Director, Brenna’s Hope Foundation

Brenna and the ACA

I am not an illegal. I am an American born and bred citizen of this country. My husband and I paid our dues to the SS system and to our country. I have the ACA on my computer. When I have questions, I don't go to news sources for answers. I search and find the answers for myself. I have found that news sources, many of them, present their own biases and too many people buy into them.

I wish the Affordable Care Act had been in existence for Brenna. Perhaps she would be alive today. As a diabetic she could not get ANY health insurance, and as a single person, living a clean life, getting her education, with no children, not pregnant, and not a felon, she did not qualify for Medicaid. It took me 37 months to get her on Medicare because of her diabetes...and she was a brittle diabetic. Had she gone to a shrink and been DX with a mental disorder, she would have been accepted for SSD a lot sooner. Before she suffered her brain injury after a surgery, we were packing to move to another state where there was supplemental insurance for the disabled. It did not exist in Idaho and 22 other states. The ACA provides for that now. Too bad Idaho was one of the states that had to be forced into providing health care opportunities for the vulnerable.

When Carrol died in 2004, I was one of the uninsurables. I was 57 and too young to draw widows' benefits through his SS---and had to wait until I turned 65 for Medicare. I put my health on the shelf, not taking needed meds because I qualified for nothing---insurance companies turned me down, naming every time I had been in the doctor's office for 10 years as a reason to deny me.

The ACA gets rid of the pre-existing conditions clauses, life-time caps, and provides for supplemental insurance for the disabled. Had we been able to get health insurance for Brenna, you can be dang sure that she would have had the coverage through an insurance plan. For us and people like us, the ACA is a blessing. Too late for Brenna and I sincerely hope none of my friends ever have to experience the horrors Brenna did for 16 months in a system that would not allow a promising young lady to get the care she needed to recover.

Incidentally, Nixon's health care proposal has the same basic ideas as the ACA.

At what point does our society suggest euthanasia or in reality, murder of a patient, because they have "outlived" their affordability? Not easy to decide when it hits your own family. If we truly believe that people deserve to die because they have lived beyond their affordability, then shut down the hospitals and never send out another ambulance. Just let them die if they have no insurance. Is that what you want? If it were your uninsured child or grandchild, is that what you want?

Brenna was 28 when she died and four classes away from her Masters in CJA. She deserved better. I offered to give up ANY possibility for new knees if the money could only go to her rehabilitation. (Rehab limits are the same for new knees as it is for a brain injury.)

Walk in the shoes I walked in for 16 months and your outlook on health care will drastically change. I sincerely hope you don't ever have to. I have no regrets for being at Brenna's side for 16 months. She was never a burden. I sacrificed nothing. I was not a hero. I was just her mom, doing what mother's do, loving her daughter and giving her the chance to continue being the wonderful person with dreams that she was the day before her brain injury.