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

Brain Injury Stats-In short

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

Figures taken from CDC, BIA

TBI
 

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

STROKES

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

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

Ancient Mesopotamians knew about brain injuries

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

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

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

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

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

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

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

Tell the one you love

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

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

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

Patience

Love

Committment

 

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