Our fears now turned into a vivid reality that this was not the flu.

Our 5-year-old son, Mikey, was stricken with E. coli O157:H7 this past year. By telling our story, we hope to alert all who read this how important it is to educate themselves about this infectious disease.

From November 8 to December 30, 2000, our son, Mikey, was hospitalized due to E. coli poisoning. What we thought was to be possibly a 9 to 12 day stay, turned into a nightmare for our family.

Mikey started out with a fever and diarrhea on November 6, 2000. On November 8, 2000 the diarrhea had blood in it. We took him to his pediatrician and she sent us to the emergency room immediately. Our fears now turned into a vivid reality that this was not the flu. Tests were taken which showed that an E. coli infection was going through Mikey’s body. The doctors told us that he needed to be rehydrated and should be fine after a few days in the hospital.

Mikey’s condition started to deteriorate rapidly. He began hallucinating and his kidneys started to fail. He was filling up with fluid. An emergency operation was performed in order for Mikey to have peritoneal dialysis (to excrete waste products, which his kidneys could no longer do for him). Because he could not eat, the doctors also inserted a central line in his neck so Mikey could continue to receive nourishment.

Our son was in severe pain through all of this. The doctors could not establish the reason why. The peritoneal dialysis was not working and he was unable to breathe on his own. After being rushed to the Pediatric Intensive Care he remained there in critical condition where a special oxygen mask helped his lungs expand to the correct capacity so his breathing was not labored.

Mikey was talking very little and crying in pain almost constantly. The doctors would not give him anything for pain because they did not want to mask any other possible complications due to this strain of E. coli.

Our family was at the hospital around the clock. Mikey was never left alone during the 53 days he spent at the hospital. We monitored him very closely because we realized the doctors did not seem to have an adequate grip on our son’s life-threatening situation.

During the summer, the hospital had several cases of E. coli infection; however, none were as severe as Mikey’s case. On further investigation we learned that only about 20% of the children who have this infection get HUS (hemolytic uremic syndrome). This is the life-threatening form of E. coli O157:H7 which goes through the body and to the brain.

Neurologists and the head doctors on his case said there was no cure for this infection and that it would have to run its course. There was nothing anyone could do for Mikey except keep him comfortable. The many days that followed this devastating news about Mikey could never be conveyed adequately. We were helpless to do anything for his recovery except wait and pray.

Into the second week of his hospitalization, we began to notice Mikey throwing his left arm in the air and his eyes crossing. As a result, an EEG was performed which revealed his brain waves were not normal. Although his first MRI was normal, at the beginning of his admission to the hospital, another MRI showed his brain to have abnormal areas in the frontal and occipital lobes, and the brain stem. Mikey could no longer speak or move. The areas beneath his lungs were filled with fluid that had to be drained. The peritoneal dialysis was not working adequately enough and he now had another type of infection going through his system. Although we were informed some days later that the E. coli and HUS had left his system, the aftermath of the infection was still attacking Mikey’s GI tract and central nervous system.

Approximately three weeks into his hospital stay, Mikey had another emergency surgery. He needed to be changed from peritoneal dialysis to hemodialysis. His large intestine was perforated, which was causing yet another infection in his system. After the surgery we were informed he also had an adhesion around his intestine that also needed corrective surgery. A few days passed and we noticed Mikey was still showing signs of severe pain. After insisting on follow-up examinations and another EEG, an overnight EEG study was ordered. The results indicated that he was, in fact, having seizures and finally another MRI was ordered. The results were now conclusive; Mikey had had two strokes. The major stroke was on the right side of his brain; the left side had less damage.

Emotional annihilation does not adequately describe what we, as a family, were feeling after hearing this news. Helpless again, we just continued to pray for his full recovery.

Mikey will need extensive rehabilitation due to all the setbacks he has endured while fighting for his life. The doctors are hopeful that he will make a full recovery. This, however, will take 1 to 2 years. Mikey has started to say a few words and can walk a little with the aid of a walker. He is taking seizure and high blood pressure medications. He is being monitored daily and will receive checkups at the hospital on a monthly basis.

Even after this ordeal, Mikey enjoys hearing about his friends at school and is happy when he sees pictures of all his classmates. His spirits were lifted while in the hospital by pictures and cards from his classmates and teachers. We are extremely grateful that Michael’s IQ and memory have remained intact. His goal is to return to school and to the life he had before this horrible misfortune. As a family, we will continue to do everything possible to help him back to a healthy, normal life.

Copyright 2002 by authors: Gina and Don

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