I didn't realize that E. coli was still out there - in recent years I had heard so little about it that I thought we were safe.
This is a story about my son Chance. Chance almost died of E. coli poisoning in August of 2005. We didn’t realize how appropriate his name would be when we named him. Now we realize how fortunate we are that he is still alive. Chance is now almost two. When he was sick he was just 18 months old. We even wrote a book about Chance and this trying event.
We were on vacation in South Dakota for a week. As we were returning home from South Dakota, Chance had a really soft stool that was greenish in color. It wasn’t diarrhea but it was soft. I thought it was kind of odd, since I couldn’t think of anything that he had eaten that was green, but I didn’t really think anything of it at the time because he didn’t have any other symptoms of being sick.
We arrived at home around 7:30. We unpacked the car and got ready for bed. My husband Kip started feeling sick with the chills and body aches. He thought maybe he was coming down with the flu. The next morning he was really sick, complaining of chills, really severe body aches, nausea, and diarrhea.
I went to work and later in the day started to get diarrhea. Kip finally called his doctor and made an appt for 2pm. The Dr told him it was probably viral and took a blood sample to test. At 4pm the babysitter called said that Chance had a fever of 100.3. I left work early to pick him up.
When I came home, I had some chills and nausea, and escalating diarrhea. Kip felt really awful. He didn’t have anything to eat and went straight to bed. Chance had a little bit of yogurt, and some salami. He didn’t eat very much. I gave Chance some Motrin for the fever and put him to bed at 8pm. I went to bed.
My husband tossed and turned and was unable to sleep. Chance woke up at 10:00pm. I went in to see why he was crying, and found that he had vomited all over his bed. I pulled him out and cleaned him up. At that point I got into the bed in our guest bedroom with Chance because I didn’t want him throwing up by himself. Chance got up several times during the night to throw up. He stopped throwing up about 8am the next morning (Tues). My husband didn’t throw up, but he was having such severe body aches and chills that he couldn’t sleep.
Chance seemed to recover somewhat in the AM. He ate some cereal with milk, and I gave him some Motrin and left to go to work around 10am. My husband stayed with Chance. I had really severe diarrhea throughout the day but kept it somewhat under control with Immodium. At this point, we still thought it was a particularly nasty bout of the flu.
That night, Chance seemed to be ok so I put him to bed at 8pm. He did not vomit all day. My husband was still very sick and everyone went to bed early. At around 10pm, Chance started to cry on the monitor. I went in to see what was wrong, and Chance had a large diarrhea and it was on his sheets and all over him so I took him out to bath him quickly and put his sheets in the wash. Chance had diarrhea about every hour throughout the night. I slept with him in the guest bedroom again.
Chance got up the next morning and had a little cereal to eat but not much. I went to work and my husband stayed home with him. Kip was still sick but was feeling a little better.
My husband called at 11am and said that he changed a diarrhea diaper and that it looked like it had blood in it. We decided to take him to an urgent care center near our home. At the urgent care center, they tried to get a stool culture but couldn’t. They gave him some fluids, but he didn’t really perk up so they recommended that we go over to Lutheran Hospital urgent care so they could examine him and then admit him to the hospital if needed.
We took Chance over to Lutheran urgent pediatric care which is basically part of the emergency room at Lutheran. They managed to get a stool sample and sent it to the lab to determine if it was viral or bacteria oriented. They gave Chance some fluids and he began to improve. He was responsive and he seemed to be himself again. He ate a popsicle and a half. We made the decision with the doctor to take him home and see how he did overnight. He had a couple of wet diapers but no diarrhea during the night. He seemed to be his usual self, but I kept him in bed with us to monitor him.
When he got up he ate a few bites of cereal, but not very much. He started to have diarrhea again. He became lethargic again, and we decided to take him over to his primary care doctor.
His primary care doctor was amazing. We were so fortunate to have her as his doctor. She recognized the situation almost immediately. She advised us that worst case this could be a case of E. coli possibly complicated by HUS. She said that this was worst case (best case it was just a virus), but that we should go over to Children’s Hospital in Denver just in case. We took Chance to Children’s emergency room.
They put Chance on fluids at the hospital and took a stool culture. Chance did not improve, so they admitted him to the hospital at around 6pm. He continued to be very lethargic and sleepy.
They continued to test Chance’s blood with a needle every two hours, which was very painful for Chance. He continued to have bloody diarrhea and the frequency increased to about every 20 minutes. It was extremely difficult to watch and to know there was nothing we could do about it.
The doctors discussed with us the possibility that he might have HUS. They were not sure because the stool sample results had not yielded any results. I think they were probably more sure about it than they were letting on. They told us that they could not treat him with antibiotics because that could possibly make the situation worse. We were so lucky to be at this Children’s hospital. I have read of many situations where E. coli/HUS is misdiagnosed. In this case even though they didn’t have a positive stool sample they were pretty sure that Chance had HUS by his symptoms.
I was in denial about the entire situation. I kept thinking that he could still have a virus and all of a sudden begin to get better. My husband realized before I did that we were dealing with a very serious situation.
Later in the evening the Drs were concerned about a possible intestinal blockage because an abdominal X-ray indicated that something looked like a blockage. They did a cat scan very early Friday morning and determine that there was no blockage. However, he did have a severely inflamed area of his colon that looked like a blockage. We did not get any sleep this night due to the constant stream of doctors who where concerned about Chance. It was an extremely tense and difficult night. I held Chance in my arms as he slept, getting up every couple of hours to change his diaper.
The doctors indicated in the AM that HUS was Chance’s official diagnosis based on the results of his blood tests. (His stool tests never actually tested positive for E. coli, he had been on antibiotics a few weeks prior to getting sick and this may be why his stool samples did not yield any positive results). This was crushing to us as we knew the chances of Chance losing his kidney functions were great, and that there was even a chance that he could die. The doctors had spoken to us at length about HUS and what the possible outcomes could be. We both cried and held onto our lethargic son. He wasn’t the little boy whom we loved so much. He is normally so active and fun, now he was so lethargic that he could barely keep his eyes open. That night his sodium was critically low. They gave him drugs to try to help keep the platelets from sticking and to help stimulate the kidneys. The drugs made his diarrhea worse. Chance had cramping bloody diarrhea about every 3 minutes (extremely painful and very difficult to watch). I held him through the night as the diarrhea continued.
The doctors put a catheter on Chance to see if he was still urinating. The amount of urine he was producing slowly decreased. I was in denial – I kept saying that he was still producing urine, but I was wrong. Chance’s kidneys stopped producing urine at 9pm. The rest of that night was spent trying to get his sodium to a non life-threatening level, and trying to start up his kidneys again. His sodium stabilized but his kidneys did not come back. We perhaps got an hour or two of sleep.
Chance had the surgery to place the catheter in his stomach for the dialysis. The plan at that point was to wait until Sunday to start the dialysis to allow the incision to heal (to reduce the chances of leaking and infection). He was extremely lethargic and still having diarrhea about once every hour. He came back to his room after surgery and had breathing difficulties due to the following:
– his airway was swollen from the tube placed in his throat during surgery
– morphine caused shallow breathing and it wasn’t metabolizing in his system because his kidneys were shut down
– fluid build up in his stomach caused his lungs to be contracted
I kept telling his nurse that something wasn’t right. She wouldn’t listen to me. Finally I pressed the button and told the nurse at the nurses station that my son was having trouble breathing. The room was immediately flooded with doctors and nurses. This was the only time we had difficulty with any of the personnel at this hospital. Everyone was wonderful with the exception of this individual. (After the incident I reported her to the nursing superintendent – she wasn’t assigned to Chance again after that).
At one point he stopped breathing for a few seconds. I was holding him – I was terrified that we were going to lose him while I was holding him. I gave him over to the doctors and nurses as they worked to resuscitate him. We were ushered out of the room and the only report we could get were from nurses and doctors who would leave the room. Words can not describe how horrible that hour was on both of us – not knowing if our son was going to live or die. Both of us were breaking down emotionally and from lack of sleep. Thankfully, the staff at Children’s reacted quickly and were able to stabilize Chance. They gave him a steroid to reduce the swelling in his throat. They put a tube down his nose into his stomach to remove the fluid. They gave him a morphine antidote to reduce the morphine in his system. They did a chest X-ray.
We came back into the room. His new nurse was cradling him in her arms and he was calm and breathing peacefully. Her name was Molly and she turned out to be his and our favorite nurse. She gave him back to me to hold. He felt so small and tiny in my arms, almost like he was a baby again.
At this point since he was having trouble breathing they decided to move him to the PICU (pediatric intensive care unit). I held him as they wheeled his crib upstairs. I had been holding him almost continuously for 3 days since we had arrived at the hospital, with the exception of during his surgery. At this point I could no longer hold him because he had to go into a special PICU crib and be hooked up to several continuous monitors. He looked so tiny in the big crib – I looked at him and the only thing I could think about was that he was going to die. The reality of the situation had finally hit me.
This was at approximately 2am Sunday morning. His electrolytes were critically out of balance and they decided to start the dialysis immediately to try and stabilize him. The head dialysis nurse was paged at home to hook him up. I was almost delirious, I begged the head nurse in the PICU to keep Chance alive until they could start the dialysis and she promised me that they would keep him alive. She could tell that I was breaking down insisted that I lay down in the parents room and try to get some sleep.
Chance still continued to have diarrhea about once every 4 hours. His stomach was continuously pumped throughout the night. As you can imagine, it was difficult to sleep that night. My husband stayed up keeping watch over Chance while I finally slept for 3 hours in the parents room. His dialysis started at around 3:30 am.
I moved into Chance’s room in the PICU. He was not responsive. He wasn’t in a coma, but he appeared to be in a very deep lethargy and he slept almost all the time. He was so sick that he didn’t even suck his thumb. He spent a relatively quiet night in PICU still on dialysis. This first session of dialysis lasted 18 hours. We were not able to hold him because he had too many tubes and he was just too sore and uncomfortable. My husband’s parent arrived from Kansas to help us with our other children. We sent Kip home due to the fact that he was near collapse. He had gone three days on 2 hours sleep.
On Monday morning Chance was removed from dialysis. He was stable, but still very lethargic. We were still unable to hold him. In the afternoon he was moved back to the regular pediatrics floor. The doctors were certain that he was going to live; however, this was the start of a long series of complications.
The tube to his stomach was removed as it was thought that he didn’t need it any longer. His heart rate started to go up until it was way above normal (160-180). The doctors were unsure of what was causing it but determined that he might be low on fluids because of the long dialysis. They gave him some fluids and it seemed to help some. Chance was a little more awake but extremely sleepy still. He was put back on dialysis in the evening. Chance was unable to sleep deeply with the dialysis fully draining and refilling every cycle (2 times per hour). He would wake up in discomfort with every cycle, so he was unable to get any sound sleep. No one got any sleep that night.
We were finally able to hold him again. He was basically a pin cushion from so many needle pricks and the nurses could no longer find any veins to take blood so they decided to insert a pickline into his chest and upper arm. The insertion of the pickline was minor surgery which he tolerated with no complications. From that point on the nurses could use the pickline to withdraw blood and for his IVs and that meant he would no longer need to be poked with needles. Chance’s red blood cells tested low. The doctors were concerned that a transfusion would be needed. There was discussion that a transfusion might delay or even reduce the return of kidney function. His electrolytes were also off and the doctors were working to stabilize them. That night they changed the dialysis so that it was on a less disruptive setting and he was able to sleep a little more soundly. His heart rate was still very high. He also had issues with his glucose being dangerously high so they adjusted the intravenous nutrition and dialysis to reduce his glucose. He did sleep better with the lighter dialysis setting.
Chance looked about at his worst since the PICU today. He was very dehydrated and his eyes were sunken in. He was very white from the anemia. Chance was given the blood transfusion. His heart rate went down temporarily, but went back up again, probably due to dehydration from the dialysis. He was given fluids, but his heart rate improved only marginally. He was given an EKG which indicated his heart was healthy but beating very fast.
Chance’s heart rate continued to be high. He had an echo-cardiogram (ultra-sound of the heart), to determine whether or not he was having heart problems. The heart specialist reviewed it and determined that his heart was not having issues. Chance began throwing up and having very heavy wet watery diarrhea again, this time with no blood. The doctors indicated that some toxins or bacteria were still in his body causing the diarrhea and vomiting.
Chance continued to have the wet diarrhea. He threw up most of the night, until around 3:00 am when they gave him some anti-nausea medicine and that seemed to stop the vomiting.
Chance did not vomit but continued to have the really wet heavy stools throughout the day. His sodium was low again so the Drs worked on stabilizing that through fluids. The Drs were concerned that the bacteria was still in his system and they took more stool cultures. In the late afternoon his stomach became extremely bloated and he began screaming in pain. His heart rate went up into the 200’s. They ordered an X-ray but it took almost 45 minutes to get the X-ray machine to his room while he screamed. They took the X-ray, then gave him some benadryl to calm him down. The X-ray showed that his stomach was extremely distended with fluid and air. They put the tube down his nose to his stomach again and began continuously pumping his stomach. A large amount of fluid and air was removed. They decided to do a cat scan in the AM to determine whether or not there was some type of blockage that was causing the fluid to build up in his stomach. If a blockage showed up on the cat scan surgery might be necessary to correct it. The diarrhea began to taper off somewhat.
Chance was more alert today but very irritable. It was difficult to tell whether or not he was in pain or just angry. He cried and screamed most of the day. He screamed for food and water, which we were not allowed to give him. He screamed to have the machines and tubes taken away because he thought they were making him hurt. The Drs told us that extreme irritability is a symptom of HUS. It was horrible to listen to your child scream for food and water and not be able to give it to him. He was on the wall mounted stomach pump for some of the day. Then they got him ready for the cat scan so they took him off the stomach pump. They took the cat scan and determined that there was no blockage. They put him back on a different type of pump. Around 4pm his stomach became distended again and he began screaming in pain. Again they got the X-ray machine up to his room. We had to wait about 45 min while he screamed in pain. They took the X-ray and determined that the tube had slipped down into his small intestine and was pumping fluid from his intestine and not his stomach. They moved the tube up and it began pumping from his stomach again. He was still in extreme pain so they gave him a pain reliever. This helped him sleep. Since I was very concerned about his pain level they decided to put him on Tylenol continuously. He slept through the night.
Chance had a relatively quiet day. He was very irritable but not as irritable as the day before. He smiled and laughed a little bit for his sister. He wanted to be held by me all the time. His red blood cell count continued to creep slowly lower, but not low enough for a transfusion. He was somewhat lethargic, probably from the anemia. He continued to be on a continuous stomach pump to remove the fluids from his stomach. He had a difficult time sleeping because he didn’t have any benadryl or pain medication. He wanted to sleep with mommy. He also screamed for water periodically throughout the night. We gave him a small amount but it wasn’t enough.
This morning he was very lethargic and pale. His red blood count slipped a little lower, but his platelets were up so they decided to hold off on the transfusion, hoping his body would turn a corner on its own and that his red blood cells will come up. The stomach pump continued to pump fluids. The Drs said absolutely no water because they were concerned about the amount of fluid still coming up from his stomach. He continued to scream for water. His heart rate was up and down, sometimes over 200.
At around 2pm it appeared that he had a wet diaper, but it was difficult to tell. The nurse weighed the diaper and it was approximately 40ccs heavier than just the diaper, indicating that he had probably urinated. Everyone was guardedly optimistic, but since we didn’t know for sure, we weren’t ready for celebration yet. We continued to watch for it through the night.
Today was our 4 year wedding anniversary. Chance actually had a diaper with a significant amount of urine in it! We were ecstatic. The doctors were even more optimistic that he would recover his kidney functions. This was his 11th day of dialysis. The kidney specialist indicated that the average time on dialysis was 14 days, so we were hopefully getting close to kidney recovery. We had a quiet anniversary dinner in the hospital. Chance’s favorite nurse stayed after her shift to watch him for us so we could have a few moments alone.
8/18 – 8/30
Chance continued to have small urine diapers, however the doctors were concerned that he wasn’t producing enough urine. He still had the watery diarrhea. It was different from the first round, a different color and smell. No one really understood why he continued to have it. The doctors speculated that it was because he didn’t eat or drink anything for nearly three weeks, however they continued to test stool samples to see if they could find any other cause.
Over this period of time, Chance continued to experience painful stomach issues. He started to slowly drink and eat again. He also started to spend some time sitting up in bed, and walking for very short periods. He had gone 3 weeks without even walking. He also started to suck his thumb again which was a very good sign that he was starting to feel better.
He continued to be extremely irritable, but every day he was slightly better. His sister came to visit him and made him laugh, but most of the time he fussed and wanted to be held. I was still living at the hospital. Kip went home each night to take care of the dogs and our house. He also had to continue to run his stock broker business and our trash removal business. My work had given me a FMLA leave of absence.
We passed day 14 on dialysis and still not enough improvement on his BUN or creatine numbers for the doctors to start reducing the amount of time on dialysis. We were beginning to worry that he wouldn’t recover his kidneys. As the days passed the doctors started discussing home dialysis and kidney transplants. We were so happy that he was still alive, however we were mentally preparing for the fact that his kidneys might not recover.
Every morning the nurses would come in to take blood for the renal panel. We would wait in suspense for the results. His BUN and creatine numbers lowered slightly, and then went back up. We were losing hope of kidney recovery. The doctors indicated that if Chance was on dialysis for 4 weeks, he would probably not recover his kidney function. We were quickly approaching the 4 week mark.
On Sat Aug 27th , the dialysis nurses starting training me for home dialysis. I went home to stay overnight with my sister and my daughter. I had a very candid discussion with my 8 year old daughter about Chance’s condition and about the possibility of home dialysis and kidney transplant. This was Chance’s 21st day of dialysis. Kip stayed at the hospital. The next morning Chance’s renal panel numbers showed improvement, but we didn’t want to get our hopes up because this had happened once before.
The next day was Sunday the 28th. His numbers were even better than the day before! We were guardedly excited, but we had been through so much that we didn’t want to set ourselves up for disappointment. He still wasn’t producing enough urine, so the doctors were still concerned. The doctors adjusted his dialysis to a shorter duration to see if his kidneys could handle it. This would turn out to be his 22nd and last day of dialysis.
On Monday the 29th, his renal panel numbers showed some improvement, indicating that his kidneys were beginning to process. The numbers weren’t normal, but they were improving. The doctors were starting to get excited and so were we! The kidney specialist decided to take him off dialysis that night to see if his kidneys would kick in. This would be a pivotal test – if his renal panel numbers went up after being off dialysis that would be an indicator that his kidneys were not able to function on their own. I stayed at the hospital that night, but neither one of us slept very much.
The 30th of Aug was my husband’s birthday. The nurses came in at around 6am to take Chance’s blood for the test. I seemed like hours, but the test results came back in 20 minutes. Chance’s renal panel numbers had decreased overnight! His electrolytes were normal. His kidneys were functioning! Every doctor or nurse that had worked on Chance came in to congratulate us. The doctors scheduled him to have his catheter removed later that afternoon.
His catheter was removed without incident. He was still having trouble keeping food down and he was still having diarrhea. We didn’t know this at the time, but he had picked up another bacterial infection in the hospital called c.diff.
We went home on Thursday. Chance was so excited! He kept looking around and pointing at everything! He was finally beginning to talk again. He barely spoke at the hospital. The only words he said in the hospital were “mama”, “dada”, and “oh”. We were worried that he would be delayed in talking because of the trauma of the hospital stay. Unfortunately he continued to have the runny diarrhea over the Labor Day weekend and on Sunday he started vomiting. By Monday he was dehydrated again.
We took him to the emergency room. The kidney specialist who had seen him previously was worried that his kidneys might fail again. They quickly ran a renal panel. The renal panel indicated that his kidneys were fine! That was such a relief. However, the doctors didn’t know what was causing his diarrhea, and took stool samples to run tests. They gave Chance fluids to help him get re-hydrated. Unfortunately he no longer had the pickline so he had to be pricked to get blood.
This time the hospital stay was torture. Chance was extremely upset that he was stuck back in the hospital. We were also confined to our room because they didn’t know what was causing his problems, and they were concerned that he might be infectious. He screamed and screamed to be let out of the room.
Finally one of his stool sample tests came back positive for c.diff. It was such a relief to know what was making him sick. This bacteria could be treated with antibiotics, so they got him started on that right away. We were then released from the hospital on Thursday. It was wonderful to be home. The medicine started to take effect over the next few days and Chance began to feel better.
For a couple of months after his hospital stay, Chance continued to have problems eating. He ate very little food, and our doctor had us give him pediasure to try to get him to regain the weight he had lost. He was 23 pounds when he got sick, and when we finally went home from the hospital he was about 20 pounds. He had gotten down to as low as 17 pounds in the hospital. Slowly over time his eating improved.
His long-term kidney prognosis is unknown. He has tests periodically – so far everything looks good. The kidney specialist says that we need to continue to monitor him to make sure his kidneys are still functioning appropriately. It’s possible that he may have kidney failure in the future, but for now we are so thankful that he is doing well.
His stool samples never actually tested positive for E. coli. However, the doctors at the hospital are positive that this is what he had based on his symptoms. After going back through every step of the prior 10 days, my husband and I think we know where he ingested the food that made him sick (we think it was sausage from a place we ate at while we were on vacation). However, since his stool sample did not test positive, his strain can never be matched to any other strain. At that time there were 5 other children in the hospital with the same thing Chance had. One was a 4-year old girl from South Dakota in the hospital at the same time as Chance with a confirmed diagnosis of E. coli. However, the SD health department basically did nothing about it because Chance’s case was “not confirmed.” They said that they would not investigate based on only one confirmed case. We were unable to find out which meat packing company supplied the restaurant with the sausage that Chance ingested. It was an extremely frustrating experience. The CO health department tried to help us but they could only do so much because they couldn’t force the SD health dept to investigate. There were no other reported incidents of E. coli in SD during that timeframe. We were unable to prove anything and we were unable to stop that restaurant from possibly poisoning some other child in the future.
The entire experience was such an eye opener. I didn’t realize that E. coli was still out there – in recent years I had heard so little about it that I thought we were safe. I was completely wrong. Now I want to do something to make sure other children don’t have to go through what Chance went through.