A belated Happy New Year to all. And, Thank you everyone for your patience!! Our site was not working on our end from Dec until today – March 12, 2015. It was my fault and I had been posting on an old WordPress and so my daughter Kacee finally fixed it for me. I did post every month but it was not “seen” or “saved.” My husband says we are “tech nincompoops” (LOL). Guess it’s true!
2015 has been amazing and challenging. So many continued blessings with having our home handicapped for Trina and yet challenges with the medical “system” and finding help for Trina’s out of control behaviors. She cannot help herself and the screaming and flailing is intense. I think we have had 8 doctor appts in 4 months regarding this. After trying many meds that did not work – either a med made it worse or knocked her out. We do NOT want Trina staring into space unable to move just to have her quiet, so drugs are out. In fact now we are trying taking her OFF of some of her drugs to see if this helps. It’s only been a week of this and already we believe it is a little better.
Also, Trina has broken her wheelchair, her stroller and the rails on her hospital bed from kicking (and she is strong)…so finally we found a great repair guy in Anderson that is welding her strong, new help for her legs so that she is safe and secure. It got to the point where I could not even take her for a walk or in public in her wheelchair or stroller as she’d kick her legs loose and it became dangerous for all. SOON we will be able to get back to healthy living with these items repaired and restored to being better for her. YAY! It takes time to find the right resolve but there is always hope and we just have to keep up the research.
We understand how confusing it is for those who see Trina on the website or in a brief and quick video (or even on the Dr. Phil show) as she “looks” almost normal and not non-cognitive or vegetative. However, if one reads the medical definition – it is not what you would think because the brain stem can be OK and that allows for emotions to be present (without cognition) and her body is moving, etc. BUT she is truly detached from herself and is not aware of her personhood. So, I say to people you have to be here to see her for a longer period of time to really “get” her condition. See below my “partial” definition of vegetative:
“The vegetative state is a chronic condition that preserves the ability to maintain BP, respiration, and cardiac function, but not cognitive function. Hypothalamic and medullary brain stem functions remain intact to support cardiorespiratory and autonomic functions and are sufficient for survival if medical and nursing care is adequate. The cortex is severely damaged (eliminating cognitive function), but the reticular activating system (RAS) remains functional (making wakefulness possible). Midbrain or pontine reflexes may or may not be present. Patients have no awareness of self and interact with the environment only via reflexes. Seizure activity may be present but not be clinically evident.”
You can google the definition and read the whole thing but it is a very close description of where Trina is at today. Her movements are reflexive and not deliberate. She does not respond to her name or to any of her care needs except that they must be done for her 100% of the time. There is not one thing she can do for herself or to help us. Even water on her body in the shower emits a reflexive reaction as she doesn’t know what is happening with the basics of her care. Words of instruction do not help either – her reflexes happen in all situations and are disconnected to cognition. That is why we have difficulty finding caregivers as she is strong and her extremities are kicking and flailing as a reaction to her environment and you can get hurt. She is 100% innocent in her behavior as without cognition there is nothing she can do to change any of this.
I have had several people make comments about how she looks and what it looks like she can do or not do to question this vegetative definition. Believe me – we know. And, we want her to advance and not have this to define her, but we are realistic and though we will never give up hope – we will work with her where she is at … and continually research any means of making the quality of life better. Hope all this helps those of you who made inquiries.
We are looking forward to a great year. Please continue to keep in touch. God Bless…