Archive for the ‘Coma’ Category

Surgery is Over

Just talked to the neurosurgeon and surgery went well. A shunt was inserted in her cyst and spinal fluid is again flowing. Will soon see her in recovery. Keep praying.

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This Friday, April 26th, Michelle is being honored at a Gala Dinner for her high school’s 85th anniversary, as a woman of faith.  Who else do you know who could undergo ten brain surgeries, be unconscious close to eight months, be tube-fed for two and a half years, undergo four to five hours of therapy every day yet wake up every morning thanking God that she is alive? She is truly an inspiration.

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Today marks the anniversary of Michelle’s accident. It has been 15 years since she was hit by a car. I can’t believe it’s been that long. What a journey we’ve been on! She’s taught us so much about appreciating life, forgiveness, perseverance, but especially love. In fact, her favorite song is “I am surrounded by love.”

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Both political parties need to nuance their discussions to better include persons with disabilities. The Republican Party needs to recognize that some people do need governmental support, who through no fault of their own can’t make it by themselves. The Democratic Party needs to recognize that it is not an either/or solution. Personal responsibility should be encouraged. We need to reflect on the principle of subsidiarity, which states that the lowest levels of competence should take precedence but when the needs are too overwhelming higher levels of society need to step in. For example, when going through our experience with Michelle we were usually presented with an either/or proposition. Either you’re on your own or you put her in a nursing home where Medicaid will pay. We brought her home and care for her every day. We did not walk away from our responsibilities but we do need help. Our family carries the bulk of the necessary care but several hours of Medicaid paid nursing assistance is also needed. What I want to hear is a more nuanced political discussion of how to better support persons with disabilities; not how to abandon them or turn them over to the state.

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Let me tell you a story. When my daughter was hit by a car while attending college in Chicago she was taken to Cook County Hospital, a county hospital and the nearest trauma 1 hospital. In the neuro ICU with my daughter was the daughter of the woman who ran the elevator at the hospital. Upon discharge, my daughter went to the Rehabilitation Institute of Chicago, one of the best in the country. The daughter of the elevator operator went to the county rehab facility. A year later I was back in Chicago and visited the hospital. I recognized the elevator operator and asked her how her daughter was doing. She told me that she had passed. She had choked on her mucus in the county rehab and died.

When we discuss access to health care we need to recognize that if someone is rushed to an acute care hospital they will get the same care whether they have insurance or do not. In fact, in the case of trauma, you want to go to a county hospital because they have the most experience in dealing with trauma. However, once you leave the acute care facility care depends on insurance. Too often we focus on our technological successes but people more often die of bed sores, infections, poor nursing care, improper medication, etc. Here’s where the real discrepancies in health care lie.

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You might want to check out this link on a recent publication by the military on TBI

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Let’s put political labels aside for a moment. Help me think through my problem.

I too was a believer in the American dream: work hard, save your money, get a good education and you can accomplish anything. Then my daughter, who was an honor student at the University of Chicago, was hit by a car and suffered severe brain trauma. Then I saw the other side of the American dream: if you can’t produce you’re worthless. In both explicit and implicit ways we were informed throughout the many years since her accident to cut our losses and move on. In the beginning it was through the encouragement to sign DNR orders. Then it was consistent suggestions to put her into a nursing facility.

I think of all those brave men and women who served in our wars and came home seriously disabled. Are they receiving adequate care? We want our government to protect us but do we want our government to care for the casualties of war?

Indeed, according to market principles my daughter and other persons with disabilities can be a financial drain. They can also be a tremendous emotional drain for those caring for them. But they are not worthless. In fact, if the resources are there to care for them so that the caregivers are not overwhelmed, persons with disabilities have the unique ability to take us out of our consumer mentality and show us what life is really all about. They teach us what it means to love.

So, if you don’t want the government to help me care for my daughter show me who will. Or maybe you too think her life no longer has any value.

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