Awakening Miracle
The brain-injured boy woke (refer: http://wp.me/p89n5f-a6). After the second surgery for pelvic repair he began to rouse. His first mumbling was just that–incoherent vocal fumbling that gradually grew in strength and focus.
The divorced parents appeared to have negotiated a temporary truce in taking turns to support their son’s personal care needs. For the first time his girlfriend was convinced to leave his bedside. She went home to freshen up and rest.
Another week saw increasing improvements although it was difficult to gauge the return to former self. He recognized familiar faces but at first couldn’t recall his girlfriend’s name. His behavior was contradictory–sometimes childlike with bursts of emotional tantrums interspersed with flashes of adult understanding. When frustrated he yelled and cursed ripping out intravenous tubes, but at other times when his girlfriend tended to him he made her smile by joking “You are wifely material.”
His parents responded to him as a child falling into old patterns and treating him as a willful toddler. He responded in kind. His girlfriend didn’t think this helpful. She insisted he communicate and behave as an adult and coaxed this from him. He understood she was his girlfriend although it wasn’t clear if he knew what that meant. Confusion was the prevailing sentiment for everyone.
Advocacy Miracle
And his girlfriend was angry. She kept churning the first surgeon’s refusal to operate. He had never met her boyfriend as the vibrant, happy, funny and loving young man he was. If not for her own mother pushing and asking more questions she and his parents would have given up and accepted the physician’s verdict. Her boyfriend would have died.
Medical institutions churn bodies–volumes–of both staff and patients. In the bedlam individuality gets lost. Though at times wonderfully present the human touch often goes missing-in-action. If not for the fire of hope her mother ignited the medical establishment would have pulled the plug from life-support and wheeled his body to the morgue.
Perhaps a part of the young woman’s anger was self-directed, born out of guilt for almost giving up and without a fight, for having trusted what she perceived was an expert medical professional. But with her increased exposure to the medical system a chilling realization dawned that the experts weren’t as knowledgeable as she thought. The need for individual patient advocacy was a shouting but directionless priority. Missing was the “how to” in negotiating complex pathways within hospital and medical administrations. In refusing to accept a verdict of one-size-fits-all self-education becomes necessary to understand options and alternatives.
And in recognizing the need for more patient education and advocacy maybe another invisible miracle is brewing. If like through the girlfriend God whispers in the hearts and minds of enough people to build a bridge, the separate parts can be spanned. It’s what saved her boyfriend’s life.
The next blog post will continue in two weeks time.
Could God be calling for greater patient advocacy in Ontario’s medical system? Perhaps some groups already exist? What are your thoughts?
Patients in hospital or extended care facilities definitely need someone to advocate for them. Otherwise quite often some staff decide to take shortcuts even when it is not in the best interest of the patient/resident. I visit my husband every day to make sure he is getting the best care possible and the staff are aware of this. I made a big fuss when one PSW decided to just give sponge baths instead of the showers my husband was entitled to get. Needless to say he now gets his showers twice a week.
Lynn, you are your husbands eyes, ears and mouth. Your vigilance and advocacy assures him a better quality of life. God bless your efforts.