Playing Dress Up

Playing Dress Up
Brenna wearing Mama's hat.

Monday, February 18, 2013

Let's Make Changes


Problems to address

As I traveled across the country, I consolidated the major concerns patients and facilities have for the recovery of brain injuries

  1. Lack of accredited facilities that focus solely on brain injury rehabilitation. Rural states are at a distinct disadvantage to access brain rehab hospitals
  2. Lack of adequate time for rehabilitation and recovery for all brain injuries
  3. Lack of brain injury certified nurses, case managers, and therapists
  4. Brain injury groups and facilities are not coordinating research projects and rehabilitation modules. One facility does not know what others are doing. Families and care-givers are left in the dark and find themselves reinventing the wheel with each brain injury.
  5. Congress is slow to act on Traumatic Brain Injury (TBI) Act, H.R. 4238.
  6. The educational process is deficient in informing medical staff and families the definitions of brain injuries.
  7. With the media focus on TBI, the public is unaware that each year an unknown number of people suffer hypoxic-anoxic injuries (HAI) of the brain.
  8. While the ICD-10 code is specific about the causes of TBI, the code is lax in defining HAI of the brain.
  9. Transportation to brain injury facilities is inadequate or non-existent.

Recommendations

  1. Develop a plan to establish regional brain injury rehabilitation hospitals.
  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.
  3. Encourage nurses, case managers, and therapists to become brain injury certified
  4. Form a study committee of TBI health care experts, affected groups and organizations that have shown an interest in reducing the impact of brain injuries on their business or industry and brain injury patients and their families. This public/private committee should look at reducing the number of brain injuries occurring in the United States and also offer solutions to improving the research, diagnosis and treatment of all brain injuries.
  5. Brain injuries cross all levels of society. Ask your Congressional delegation to support reauthorization of the Traumatic Brain Injury (TBI) Act, H.R. 4238. The act requests $37 million dollars for projects. We 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.
  6. We need an educational process to learn the categories of brain injuries. All non-degenerative brain injuries occurring after birth are acquired brain injuries (ABI).  ABI is inclusive of TBI and non-traumatic brain injuries (hypoxic-anoxic).
  7. The CDC (Center of Disease Control) must begin a process to collect data and report HAI brain injuries. Causing the collection of HAI data would significantly increase brain injury awareness and the need for better communication for rehabilitation and recovery of patients who suffer a brain injury.
  8. The CDC, the National Institute of Health, and the Congressional Brain Injury Task Force must begin identifying the classification of brain injuries in consistent terminology. Some causes of HAI are easily defined and can be categorized as TBI today.
  9. Develop a plan to transport patients to the nearest brain injury rehabilitation facility.

Tuesday, February 12, 2013

March-Brain Injury Awareness Month

NEWS: The Twin Falls, Idaho school district is announcing a special arts contest: Don't knock your noggin.

Here are the rules for the contest.

Participants must create an imaginary character that will be a spokesperson for a youth sports brain injury awareness program. This character could appear in documents, books, or other communication devices showcasing the need for chilren to protect themselves and others from brain injury.

The entry should show a single illustration in addition to showing the character appearing in a four panel display indicating how the character could be used to discuss the issue of avoiding/preventing youth brain injuries.

Target audience: children between ages 5 and 15 (K-9th grade)

Participants must be attend one of Twin Falls' high schools, including the Alternative High School.

Use art medium of entrant's choice. No larger than 3 ft by 3 ft in size. One submission per student.
Judging by a panel to include Henley Blick (Project Administrator), a TFSD art teacher, an athletic director, students from the TF school district between the ages of 5 and 15, and Pamela Blaxton-Dowd.

Judging on 4 criteria:
     Creativity in development and design
     Use of the art medium and the talent showcased in the overall character design
     The written discussion offered by student, outlining  the use and development of the imaginary character.
     The overall appeal of the character to the target audience age groups mentioned above.

Submit by March 15.

Judging on March 18th with announcement at conclusion of judging.

Monday's visit to HBOT and Researcher


On Monday, I visited with a medical researcher, Dr. B, in eastern Idaho. She is working with a local HBOT center to provide HBOT for patients with PTSD and TBI at this time. The patients must be able to take care of themselves or have a family member with them who can take care of them. They can come from anywhere in the United States. They have 10 apartments (2 queen beds, LR, kitchen, bath, and laundry. During the study, the HBOT is at no cost to the patient. The apartments are $25/night and she hopes to find a foundation to offset that cost for families.   
Dr. B and her team blocked off their entire afternoon to be with us. Then we all went to dinner where their spouses joined us. We spent the evening talking about other ideas for research. We brainstormed ideas. When I mentioned things to her that would make caring for a patient easier, her eyes lit up. 
We talked about Brenna and her anoxic injury and they understand my personal concern that HBOT be given to hypoxic-anoxics in the early stages. I learned a bit about what is being done in other countries with HBOT. It made my head swim to know how much other countries are embracing HBOT for many health issues that aren't being allowed in the US. 
The HBOT center itself was such a wonderful place to be. The room was painted as an under-the-sea experience. Books for patients to read while in the chamber. TV to watch. I stood in the chamber and felt in awe that such a piece of equipment could be used to help so many people. 
I heard so much of what has gone on behind the scenes that we have never heard before. In England, a person with MS can use HBOT. England has over 60 HBOT units for MS alone. One European country is using HBOT to shrink tumors. They didn't feel I was out of line to suggest HBOT for hypoxic-anoxics as early as possible. I am going to track down a Scottish doctor they told me about to get his opinion. 
They agreed with me that HBOT is underutilized because too many physicians do not know the 14 indications that DO allow its use.
I learned that even with the sores on Brenna’s tailbone from the first nursing home, according to the criteria, she couldn’t have qualified for HBOT as a diabetic because the sore was not on a foot or leg,  hadn’t been there are least 30 days, and wasn’t deep enough to show bone or muscle. What kind of criteria wants an injury to be this far gone for a patient before allowing a treatment that has been proven to help? It doesn’t make sense to me. 
We need to do our best to get HBOT accepted for brain injuries, all brain injuries. No longer accept the negatives from doctors who profit on illness and intimidate us into believing they really do know best. One thing each of us should have learned through this journey, few doctors have a clue about the rehabilitation of the brain and the new frontier of research that needs to happen to ensure that every one with a brain injury has a chance to live and recover.