The phone call arrived around 7:30 p.m. on Sunday, February 22, 1998. The caller was the trauma-room doctor from Cook County Hospital in Chicago, informing us that our 21-year-old daughter, Michelle, a fourth-year student at the University of Chicago, had been hit by a car while waiting outside her dorm for the campus van to take her to dinner. The doctor told us that Michelle had suffered severe brain trauma and was on a ventilator. The team was preparing her for brain surgery, but they were not sure of the outcome because she had arrived at the hospital a "three" on the Glasgow Coma Scale, which is the lowest you can be without being declared brain dead.
My husband, our sons, and I were on a 9:00 p.m. flight out of LaGuardia Airport on our way to Chicago, not sure if we would find Michelle alive when we arrived at the hospital. Michelle had survived the surgery, and we were told that the next 72 hours would be crucial. Before the 72 hours passed, however, Michelle was rushed in for more surgery, to remove a hematoma on the other side of her brain. As a result, a new 72-hour wait began. Two days later, Michelle's intracranial pressure began to rise to a dangerous level, and the doctors put her into a barbiturate coma to help reduce the pressure.
|Parents would rather undergo suffering ourselves than watch our child suffer. Yet this is where love sometimes takes us.|
For seven and a half weeks, I lived in the waiting room across the hall from the neuro ICU with other family members and friends of patients. Finally, Michelle was sufficiently stable that she could be moved to a rehab center. She was still unconscious, but she was no longer in danger of dying. After much negotiating, we were able to have her enter the Rehabilitation Institute of Chicago. Now I saw firsthand what possible disabilities lay ahead for my daughter. Twice during our stay at the Rehab Institute, Michelle was rushed to a hospital with infections. I became convinced that she would die from one of these infections, because she was building up an immunity to antibiotics.
Because Michelle was not progressing at the Rehab Institute, she had to be discharged. She was no longer a candidate for their program. The time had come to bring her back to the East Coast, but finding a program that would accept her was difficult.
The rehabilitation process is structured mainly for those individuals who make rapid progress. If someone does not make such progress, the alternative is usually a skilled nursing facility. But a rehab center in Edison, N.J., was willing to accept Michelle, and so after almost four months in Chicago, Michelle and I came to Newark Airport by air ambulance. Although the doctors had been telling us that the longer Michelle remained unconscious the worse the prognosis, I had hoped that because she had to overcome so many medical problems (at least 10 surgeries), this process had been necessarily delayed and would not affect her prognosis. But now she was medically stable, she was out of crisis, and all we could do was wait for her to wake up.
But she did not.
|When my daughter was a dean's-list student, everyone wanted her. Now that she is severely brain injured, no one wants her.|
Finally, around the beginning of October 1998, Michelle began to emerge from the vegetative state, and therapy began in earnest. But after several months, it was determined that she had "plateaued" and that it was unlikely that any more progress would be made. In June 1999, we moved Michelle to a brain-injury unit on Long Island, but again Michelle was discharged because she was not making sufficient progress. Last November, we brought Michelle home to live with us, where she receives 24-hour nursing care and daily therapy.