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.