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