E. coli
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January, 2008: Isabella, now six, and her three year-old sister Ashley, can often be found coloring, reading, or watching Dora the Explorer in front of the television. With her parents’ encouragement, Ashley is trying her best to be a normal three year old child, running and playing with her older sister and friends, scrapes and all. But in the aftermath of her E. coli O157:H7 infection last year, it has become painfully clear that Ashley will never be a normal girl. Her mother Elizabeth has always done her best to feed her children healthful foods, and has always offered them plenty of fresh fruits and vegetables. It is therefore ironic that the baby spinach Elizabeth served in a salad with spaghetti and meatballs on August 27, 2006 would change their lives forever.
September 4, 2006
Eight days after that fateful dinner, Isabella developed diarrhea. At first, Elizabeth and father Michael assumed that Isabella had some sort of stomach virus. But it persisted, so four days later Elizabeth took Isabella to their doctor who thought she likely had viral diarrhea, and said that the illness had to run its course. Her doctor stressed the importance of keeping Isabella hydrated, and said to notify her if Isabella had blood in her stool
September 5, 2006
The next day, Isabella showed signs of improvement, so the Armstrongs thought they were in the clear. But later that afternoon Ashley also started to have diarrhea. Elizabeth and Michael naturally assumed she had the same bug Isabella did, and decided to give her plenty of fluids and monitor her condition. Ashley was markedly lethargic throughout the day. She continued to accept fluids well, but showed no interest in food, an unusual event for a child who normally loved to eat.
September 10-12, 2006
On Sunday, Ashley appeared better than the day before. She ate a small breakfast and went to her aunt’s wedding shower. While at the shower, she played with her cousins and seemed back to normal. But on Monday, her condition seemed to deteriorate. She moved very little, slept far longer than normal, and had no interest in playing. Tuesday was even worse. Elizabeth had to change Ashley’s diaper constantly—nearly a dozen times before the early afternoon—and she soon discovered blood in Ashley’s diarrhea. The sight of blood was alarming. Remembering the pediatrician’s advice from Isabella’s visit, she scheduled an appointment for Ashley the same day. After a blood draw, Elizabeth took Ashley home to await the results. Within an hour, the doctor’s office called and advised Elizabeth to take Ashley to the hospital. Despite the plentiful fluid intake, the blood tests showed that she had become dehydrated.
She arrived at the Pediatric Floor of Community Hospital and was immediately admitted for dehydration and diarrhea. First, she was hooked up to an IV for rehydration. A bloody stool sample was taken next. Because her diapers were filled with diarrhea, her medical team was concerned about their ability to tell if Ashley was producing any urine, so a catheter was inserted into her bladder to monitor her urinary output. While the insertion of a catheter sounds simple enough, for Ashley it was a tormenting introduction to what would become a lengthy and traumatic hospital stay. As the day progressed, Ashley produced countless diarrhea-filled diapers, but no urine. She also began vomiting a yellow, bile-like substance that soon became darker and greener. Elizabeth and Michael could only hold Ashley’s little hands and wait for the next bout of vomiting.
September 13, 2006
By Wednesday night, Ashley’s vomit was almost black. Elizabeth was already nearing the end of her rope, and was immensely concerned by the dark color of Ashley’s vomit. She soon learned it meant blood. The IV seemed to do nothing. Ashley vomited more and more, was anuric (producing no urine), and was beginning to appear oddly puffy. Elizabeth called for a nurse and asked to see a doctor immediately. The doctor ordered labs and Elizabeth tried to comfort her daughter. But Ashley was inconsolable—all she could do was lie in her bed and cry; she refused to be held. Her behavior soon took a shocking and seemingly inexplicable violent turn. She banged around in her crib “like a caged animal,” clawing at her IV lines and screaming—an unbearable sight to her mother. Never had Ashley behaved in such a manner.
Ashley’s lab report was grave news. Her BUN (blood urea nitrogen—urea nitrogen is what forms when protein breaks down) and creatinine (a breakdown product of creatine, which is an important part of muscle)—both measures of kidney function—were rising. The doctor explained that Ashley was experiencing acute kidney failure. She also informed the family that her pancreas was damaged, which in turn caused the profuse vomiting. They learned that Ashley now had the presumed diagnosis of hemolytic uremic syndrome (HUS). The doctor told Elizabeth that Ashley would be transferred to Riley Children’s Hospital where she could receive the specialized care she needed.
Elizabeth and Michael watched in dismay as their daughter was strapped onto a tiny gurney, and became further distraught when they were told they could not ride in the ambulance with her. They followed the ambulance in their car and tried to prepare themselves to be brave for their little girl. On arriving at Riley Children’s Hospital, they quickly ran into the hospital emergency room as Ashley was being hooked up to several monitors and a new bladder catheter was about to be inserted. Elizabeth was told to hold Ashley down as the medical team once again inserted the catheter into her urethra. Ashley was then moved to a private room and placed in isolation until lab results confirmed that Ashley was not contagious.
The parents waited and waited for the specialist to inform them what was happening to Ashley. Finally, they realized that one of them had to leave and take care of Isabella; it was decided that Michael would go. Elizabeth promised to put the meeting on speakerphone when the doctor arrived. When the on-call nephrologist (kidney specialist) arrived, nothing but bad news poured from his lips: Ashley had HUS, pancreatitis, anemia, thrombocytopenia, and rapidly deteriorating kidney function. Ashley’s diarrhea tested positive for Shiga toxin. The nephrologist stated Ashley likely had an E. coli infection that produced the Shiga toxin that in turn caused the HUS. They were told that HUS included anemia, low platelet count, and acute kidney failure. Most distressing, Elizabeth and Michael learned that death was very possible. Elizabeth describes her and Michael’s reaction to the news:
After he left and gave us time to digest, my husband and I were just speechless. We were terrified and did not know if our daughter was going to make it through the night. We prayed, called relatives, and then I settled in for a sleepless night in the ER, and Michael went home to spend a restless and scary night at home with Isabella and all her questions. Little did we know that this was to be our first of many of such long nights? One thing I remember vividly is Michael telling me that as he was putting Isabella to bed, she asked him, ‘Daddy, is Ashley going to die?’ He answered her with tears in his eyes that, ‘No, God is going to keep Ashley safe.’
September 14, 2006
On Thursday, everything seemed to be painful to her; she whimpered throughout the physical exams. She still was not producing any urine, and the bloody diarrhea persisted. Her lab tests showed progressive kidney failure, so the decision was made to initiate peritoneal dialysis. While under general anesthesia, a peritoneal dialysis catheter was inserted into her abdominal cavity and a central venous line into her chest. Elizabeth and Michael’s only comfort was that Ashley was unconscious through the entire procedure.
After surgery, Ashley was transferred to the Pediatric Intensive Care Unit (PICU) where continuous peritoneal dialysis was started. Ashley’s room was tiny and could barely contain her crib, the dialysis machine, and a small reclining chair. The isolation orders meant that anyone coming in and out of her room had to put on a gown, mask, and gloves. Only Elizabeth and Michael were exempt from this requirement since they would be staying in the room full time. Elizabeth could not even hold Ashley to comfort her. The numerous wires, IV, and bladder and dialysis catheters turned her crib into a prison. Elizabeth describes what living in the hospital was like:
If you’ve never had a seriously ill child, it’s hard to understand the strain that living in a hospital puts on you. You were, of course, worried sick about whether your child would make it through at all, let alone be normal again. There is also the strain of not getting any sleep. They do provide one chair that extends to be a bed, but it is hard to sleep on, especially when nurses come in so frequently, and her monitor alarms go off every hour or so.
September 15, 2006
Ashley’s anuria persisted. Her body became swollen with the fluid her kidneys could not eliminate, her limbs and the tissue surrounding her eyes looked especially bloated. She could not keep anything down and would vomit after attempting even a few sips of water. Her dialysis catheter became saturated with bloody drainage.
September 16-17, 2006
The next two days were difficult. She still had no urine output. Coaxing her to eat or drink anything often felt fruitless to her parents—she would vomit almost anything she took in. Ashley’s physician said that he suspected (later to be confirmed) that she had contracted an E. coli O157:H7 infection from the spinach salad.
Elizabeth describes the nearly six week hospitalization as a blur. Ashley was on constant peritoneal dialysis and IV nutrition. Ashley had no urine output, and she ate little or nothing at all.
In the first few days and weeks we watched Ashley go from being swollen from excess fluid, to dehydration when too much was removed; she looked like a skeleton. I remember Michael would not even let me mention how skinny she looked and how sunken her eyes were because we were just so terrified of what that might mean. Our lives were consumed by fear and uncertainty. Every time Ashley would move in her crib, she would set off her monitor alarms, so we never got any sleep.
She continued to require dialysis. This was especially distressing to Elizabeth and Michael, as they now knew that the longer she required dialysis, the more likely she would suffer severe and permanent kidney damage.
September 18-19, 2006
The parents remained distraught over her inability to make urine. Her tiny body had again become so swollen that she was almost unrecognizable. A registered dietician reviewed Ashley’s history and stated that she would need to be fed through a nasogastric tube if her oral intake did not soon improve. She was not eating nearly enough to support her malnourished body. One piece of good news that day was that two consecutive stool samples cultured negative, meaning that her body no longer had any E. coli O157:H7, so isolation precautions could be lifted.
September 20-21, 2006
Although she seemed more alert and playful, her nutritional status still was poor, and her lab tests indicated increasing pancreatic damage. In order to put her small intestines and pancreas at rest and to allow her pancreatitis to heal (eating, especially foods containing fat, stresses the pancreas to release digestive enzymes that in turn auto-digest pancreatic tissue), she was allowed “nothing by mouth, (NPO)”, and intravenous total parenteral nutrition (TPN) was initiated. Ashley’s anuria persisted.
September 22-23, 2006
Ashley struggled to remain comfortable after a difficult restless night. Elizabeth tried to coax her into taking her medication, and she was seen by a Child Life specialist to help her work through frustration. The child life specialist provided play therapy with appropriate toys, which helped put Ashley at ease. Peritoneal dialysis continued.
September 24-25, 2006
The next two days were not good. Ashley appeared sad, her TPN had to be increased because of poor oral intake, her blood pressure was increasing, and her anemia was worsening.
September 26-27, 2006
She constantly seemed tired and slept a lot. A music therapist came by Ashley’s room to engage her in some developmental multisensory stimulation. She only responded minimally, despite her parents’ and grandfather’s encouragement.
Later that day, Elizabeth reported to the nurse that Ashley seemed to be in more pain. The peritoneal dialysis irritated her and she became very sensitive to even subtle movements. The nurse discovered the abdominal dialysis catheter site had become inflamed and infected, which probably was the source of her increased agitation. Antibiotics were started.
September 28, 2006
Ashley was irritated and agitated from her illness, constant pokes and prodding by her medical team, and peritoneal dialysis. Even so, Elizabeth successfully got her to play a little, and this time Ashley enjoyed the music therapy. Her dialysis catheter site remained reddened with a small amount of drainage around the tubing. Her doctor decided to transfuse Ashley with packed red blood cells because her hemoglobin and hematocrit had fallen to near dangerous levels.
September 29,-30, 2006
Finally, on September 30, Ashley produced a small amount of urine—about seven teaspoons. Her dialysis catheter exit site became less inflamed and her pancreatic enzymes improved slightly. She was put on a less restrictive form of dialysis that permitted the dialysis to be placed on an IV pole. This allowed mobility. Ashley could go for a wagon ride, as long as both parents were by her side to tend to her numerous lines, tubes and catheters.
October 1-4, 2006
Ashley did not have any additional urinary output over the next few days, but her pancreatic enzymes trended down, a sign that her pancreatitis was finally resolving. On October 2 she was given an IV diuretic in an attempt to decrease her fluid overload that had caused her body to become puffy and swollen, and her blood pressure to rise. It didn’t help. Nausea continued to severely limit her oral intake. When the nurse changed the dressing around her subclavian central line she noticed that many of the sutures were no longer intact. This caused pulling and excruciating pain for Ashley—and thus no surprise that she was irritable whenever it was touched. The area was re-sutured and monitored closely for signs of infection.
October 5-9, 2006
On October 5, Ashley was transferred from the intensive care unit to the regular pediatric ward. At first, the Armstrongs were excited. The change however, presented its own difficulties. Ashley’s roommate was a very sweet girl who unfortunately had rude and loud visitors who stayed late into the night, making it impossible for Ashley to sleep. It would be over a week before Ashley could be transferred. Although the new room was a vast improvement, Elizabeth still felt frustrated. Ashley’s second roommate had a very different schedule than that of her daughter.
Ashley continued to pass only small amounts of urine, but she began to show signs of enjoying her music therapy. Elizabeth and Michael had a few reprieves from constantly tending to Ashley. Ashley’s maternal and paternal grandparents, aunts, uncles, cousins, and great grandparents all helped out as much as they could. Michael’s parents had just arrived in Rome for a much anticipated vacation when they received news their granddaughter was in the hospital with HUS. They got on the next plane back, knowing their time with Ashley might be limited. (Two years earlier, a child in Michael’s extended family died within days of developing HUS!) Michael’s parents took care of Isabella, while other relatives tried to help out at the hospital.
Elizabeth and Michael also struggled with their full-time jobs. Although both brought their computers to the hospital and worked in the brief moments Ashley slept, their bosses became frustrated with the situation. Both Elizabeth and Michael worried that their extensive time away from their jobs might negatively impact their careers.
October 10-12, 2006
Ashley’s intake improved enough to discontinue IV nutrition. Elizabeth and Michael began to hope that she might be soon released from the hospital, but the hospital social worker convinced them that Ashley needed to remain in the hospital for a while longer. Although disappointed, Elizabeth and Michael accepted the news.
October 13-14, 2006
Even though Elizabeth and Michael wanted Ashley at home, they began to have reservations about being able to care for her. Ashley presently had a full medical team, but at home, they would be the sole providers. These fears were reinforced after witnessing a complication. On the afternoon of October 13, Ashley’s dialysate solution was not draining properly—which could indicate a big problem. An x-ray and ultrasound revealed no obvious cause, however, so the physician ordered a flush of the catheter to remove any small blood clots that might be limiting flow.
October 15, 2006
Ashley’s acute kidney failure continued to improve, allowing her peritoneal dialysis exchanges to be reduced to one every six hours. Despite flushing the catheter, the dialysate solution continued to drain slowly.
October 16-17, 2006
The medical team attempted to discontinue peritoneal dialysis since she was producing more urine. The next day, however, her BUN and creatinine levels rose significantly, and peritoneal dialysis had to be restarted. Her parents started training to administer dialysis treatments at home.
Ashley’s anemia continued to be a concern. Her physician ordered Epogen injections three times per week to promote the growth of new red blood cells. She also was medicated with Kayexalate, (a very unpleasant oral medication) to decrease her blood potassium concentration (high levels can result in cardiac arrest). Elizabeth and Michael met with a registered dietitian regarding Ashley’s restricted diet.
October 18-20, 2006
Elizabeth and Michael continued training for home dialysis. Instruction included how to prevent contamination when changing dialysis tubing, how to recognize signs of abdominal or catheter exit site infection, how to dress the exit site, how to clean the central venous catheter outlet port, and how to administer Ashley’s injections and numerous oral medications. They were instructed on her restricted diet, that included the virtual elimination of foods high in sodium, potassium and phosphorous. The Armstrongs were shocked to learn how few foods Ashley could eat. Dairy products were limited, no salty foods, no more bananas, avocados, or chocolate. Most fresh fruits and vegetables, potatoes, dairy, yogurt, nuts, peanut butter, tomatoes, and pizza were out. Elizabeth will have to pack Ashley’s lunch when she becomes old enough to attend school, as school lunches will not be an option.
After five weeks of hospitalization, Ashley was finally able to go home, although the Armstrongs faced a challenging home schedule. She required dialysis exchanges three times per day, her blood pressure had to be checked twice daily, she required injections and a myriad of oral medications, and she had to return to the medical center every week or so for follow-up care with her nephrologist.
Ashley’s first return visit with her nephrologist on October 20, 2006 was reassuring in that her urine output and kidney function was improving. This allowed a gradual reduction in her dialysis prescription.
A relative and close friend of the Armstrongs describes the family’s experience:
These past several months I have heard about and observed the Armstrong family radically changing everything about their world. First, months at Riley Children’s Hospital, fearful of all the bad news they were getting due to the tainted spinach she ate. Worry, prayer, fear, resentment and anger have been the many emotions this family has experienced. Lost hours at work, stressful separation from their older daughter, financial burdens, day to day demands and anxiety due to the new schedule and way of life are just minor worries this young family has faced. The realization is that no matter how severe or to what capacity Ashley’s renal failure is or becomes, she will always be altering the life she had before she ate this spinach. The looming probability of psychologically preparing for a transplant some day breaks my heart.
Tending to Ashley’s dialysis caused huge concerns for Elizabeth and Michael. They tried to make their home as germ-free as possible. They worried they were not performing the dialysis properly. Failing to remove enough body fluid would cause swelling and her blood pressure to rise. Removing too much fluid caused dehydration. During a dialysis treatment on November 17, Ashley’s blood pressure reached 170, and they rushed her back to Riley Children’s Hospital. There, her blood pressure was dangerously elevated for her age at 142/86. She was therefore admitted to the hospital and closely monitored. The next day Ashley’s dialysis was increased to three exchanges per day and she was restarted on antihypertensive medication. Elizabeth and Michael remained distressed at the difficulty of keeping Ashley’s blood pressure in check.
During the month of December Ashley’s kidney function continued to slowly improve, and dialysis was finally discontinued after four months of dialysis dependency. Her blood pressure, however, continued to be a problem, so the antihypertensive medication Hydralazine was added.
By January 24th, Ashley’s kidney function, while far from normal, had improved enough for the peritoneal dialysis catheter to be removed.
Her blood pressure, however, continued to be elevated, so the angiotensin converting enzyme (ACE) inhibitor lisinopril was increased not only to achieve better blood pressure control, but also, hopefully, to reduce hyperfiltration injury, thereby slowing down the inevitable progressive loss of kidney function that occurs in those left with severe chronic kidney damage. The diuretic, furosemide, was also restarted to reduce swelling and improve blood pressure control. In March, 1-25 vitamin D, a special form of vitamin D, was started to improve bone health (kidney failure leads to weakened bones). Ashley will have to take medication for the rest of her shortened life. She still endures weekly blood draws to monitor her potassium, BUN, and creatinine levels
Although Ashley’s condition is presently stable, a constant cloud hangs over the Armstrongs. Ashley will encounter difficulties in achieving normal growth and sexual maturation, and will undoubtedly require at least two to three kidney transplants over her life, with the associated risks of premature coronary artery disease, life-threatening infections, and cancer. There will be long periods of kidney dialysis treatments while awaiting additional transplants. Elizabeth and Michael worry that Ashley may never be able to get married and have children.
Elizabeth describes the long-term impact of E. coli on her family’s life:
We were a family that enjoyed cooking and eating new foods. That part of our life is over. We also like to travel and had planned to take the girls to many places. We wanted them to experience other cultures. At this point, I don’t see that kind of travel happening. . . . Michael and I will always have to weigh the pros and cons of moving jobs due to Ashley’s now pre-existing medical condition and the effect it will have on our medical insurance. We will always have to weigh job location and whether or not we will be able to have access to a renal specialist. When we want to go out, we will not be able to use a neighborhood babysitter, because of the specialized care [required for] Ashley’s needs.
The only thing that we can do is focus on living day to day. Unfortunately, giving multiple medications and shots, and worrying about results of Ashley’s blood tests are just a part of life now. We are hopeful that medical research will make things better in her future. We just pray that Ashley’s kidneys can hold out for a few more years.