My name is Amy and I live in Michigan with my family. The events that took place on July 21, 1999 would change my life and the lives of my family members forever. It was the day my 49-year-old mother had surgery for a routine hysterectomy.  After the surgery my mother had difficulty keeping anything down. She vomited from Wednesday to Friday. Finally on Saturday she was able to keep food down but that afternoon she took a turn for the worst. She went into respiratory distress. She could barely breathe. Her pulse-ox plummeted to below 70. She was rushed to the intensive care unit and a triangle-shaped mask (the name escapes me) was placed over her face to help her breathe. Her pulse-ox improved. My stepfather and I went home for the night.

In the early morning hours of Sunday, July 25, however, she was put on a ventilator and heavily sedated. At that time there were many tests to be run and she needed to undergo surgery to have a Swan Catheter put in and her diagnosis was still forthcoming. Eventually we were to discover that she had ARDS. She experienced many problems including an unexplained drop in her platelet count and eventual development of possible pneumonia. This complication made her take another very drastic turn for the worst after what was a steady upward climb over the course of 3 days.

We were told she had the best pulmonary doctors heading up her care but even they didn’t fully realize, or weren’t willing to inform her family, of the very real possibility that she could die from this. Quite the contrary, they continually reassured us that she would NOT die from this. I searched the Internet trying to find information and did not come across the ASC site at the time. What I was able to find was information regarding possible causes and the high mortality rate. When I confronted her doctor with this information he belittled it and its source by simply saying that there was all kinds of misinformation on the internet and that most patients who die of ARDS often die of organ failure due to another underlying cause such as AIDS. This of course was not accurate as I was to later discover after finding the ASC site.On my mother’s fourth day in ICU at the local hospital, my family and I made the decision to move her to the University of Michigan Medical Center in Ann Arbor, Michigan. We all feel that it was the decision that meant the difference between life and death for my mother. We don’t think she would have survived the night in that other ICU.Upon arrival at U of M the medical team in the pulmonary ICU began doing what they would later tell us were "last ditch efforts" to stabilize my mother and keep her alive. They put her in a drug-induced coma and paralyzed her so she would not fight against the high pressure settings on her vent and blow out her lungs. It was also to prevent her from feeling any pain associated with having her settings so high. She stayed paralyzed for one day but was in the coma for about 4 ½ weeks. They also rotated her position early on, including laying her on her stomach in an effort to get some of the fluid to move out of the alveoli where it could be suctioned out of her lungs and tested for the source of infection.

During the first couple of days at U of M my family and I got an extensive education (extensive compared to nothing at the other hospital) on the causes and affects of ARDS. We learned that my mother was in second-stage ARDS where the fluid-filled alveoli begin to develop scar tissue in them causing fibrosis to set in. The question was could it be stopped and could it be reversed. All the doctors would tell us as far as her prognosis was that every day she was still alive she was a survivor. Not exactly words of encouragement.

So for days and days we kept a vigil at her bedside waiting for some sort of change. At the time it never occurred to any of us to keep a journal of the daily events. I wish now we would have because it could have been so helpful in answering all of her questions regarding what took place during the weeks when she was "out." But we didn’t and as the days wore on there was what appeared to be no change at all. No source of infection was found although she continued to have a fever of 100 or higher. Her other organs never showed any sign of deterioration or failure which was a bright spot indeed. So her daily regimen of care consisted of intravenous fluids, mega-dose antibiotics, respiratory care, and round-the-clock monitoring.At one point after the first or second day we were approached by the head of the pulmonary department to have my mother placed in a blind study to see if mega-dose steroids in second-stage ARDS were helpful in the recovery process. We put her on it immediately because we felt we should take advantage of any opportunity to increase her odds. We will never know if she got the steroids or a placebo.

About 2 weeks into her ordeal at U of M my mother developed a pneumothorax and required a chest tube. That was a scary situation because when I called the hospital that night before I went to bed to check on my mother I got her doctor instead of her nurse and he advised that the family should get to the hospital immediately as her pulse-ox had plummeted and they couldn’t find the reason why. I live 2 hours from the hospital. I thought I would get there to find my mother had passed away but was relieved beyond words to get there and find that they had found and fixed the problem before I arrived. She was resting just as peacefully as I had left her that afternoon. That was the worst day for the experience.There were many, many ups and downs along the road to recovery…much like riding a roller-coaster that is running out of control with no way to get off. It was hard to hang on to the bright spots and almost unbearable to face another low one. It took its toll on myself and my family. A couple times my stepfather and I didn’t do very well dealing with the stress of it all and we allowed it to scar our relationship. I would recommend that anyone in this situation seek the help of the hospital chaplain or counselor and let them mediate where there is strife and tensions that are out of control.After many prayers by friends, relatives and acquaintances and long hours of wondering and worrying, my mother came off her vent for good in 6 ½ weeks. There was one prior attempt that was successful for about 24 hours but she had to go back on the vent again. At this time she had to get a trach. Over the course of her ordeal she also developed severe muscle myopothy which resulted in the loss of all of her muscle mass as well as her reflexes.

Later x-rays would show that after her lungs began to clear there was a spot on the lung that had collapsed that was not clearing. Further testing would indicate that the spot was an abscess and quite possibly the illusive source of infection the doctors had been searching for. Antibiotic treatment cleared up the abscess.

Through it all we tried to remain positive when we were in my mother’s presence because we didn’t know how much she was aware of what was going on around her. We held her hands and rubbed her muscles; moved her arms and legs as much as possible; assisted in her hygienic care; read to her and watched TV with her; filled her room with the cards she received and put pictures on her walls of family and friends; anything we could do to make sure she felt loved and cared for.When she left the ICU 4 days after coming off the vent she went into the general area of the hospital on the pulmonary floor. She experienced ups and downs there as well but eventually after about 10 days or so she went on to the re-hab portion of the hospital where she was able to regain enough muscle control and strength to go home with oxygen and a physical therapist. By her date of discharge my mother had spent 79 days in the hospital.

After arriving home she underwent 1 year of physical therapy. She has been back to her pulmonary doctor and her re-hab doctor several times for evaluations and at the present time has reached a plateau. She will not be able to return to her former work because of her muscles, ironically, and not her lungs. She is now in early retirement at the age of 51. She also has had some experiences of memory difficulty. She easily forgets things or becomes easily confused when attempting to learn something new. She also has no memory of her experiences in the hospital, which the doctors had told us would be likely.