7-29-2002 … I didn’t want to forget, not one thing. On Monday July 15, 2002 after visiting our local spray park and playground, my daughter Morgan came to me bent over at the knees telling me she had to go potty. This was around 1:30 pm. I told her to get to the toilet and she said, “I can’t, I went poo poo in my pants.” Morgan was upset this happened and I told her it was OK, accidents happen. I washed her up and put clean clothes on her. Around 7 pm, we met with friends for dinner at a pizza parlor. During the course of our dinner, Morgan went to use the restroom. Her sister Taylor went with her and returned to inform me Morgan had to poop but couldn’t go. I took Morgan back into the restroom, but Morgan couldn’t go. She complained after dinner that her stomach hurt but the rest of the evening was what I thought normal.
On Tuesday the 16th, Morgan seemed and acted normal. She had several stool movements throughout the day, appearing normal. She complained one time that her belly ached and she slept most of the afternoon away.
On Wednesday the 17th, Morgan again seemed and acted normal. She had a few loose stool movements, but nothing that we were concerned about. We ate dinner and attended the 7 pm church services. Her sister told us she had to take Morgan to the bathroom twice in that hour because she had to poop. Around 10ish that evening, Morgan rushed to the bathroom and had a very watery bowel movement. I gave her a red popsicle and she went to bed. Around midnight, Morgan woke her dad having to go again. I got up and noticed her stools were still watery, but the water was pinkish-red in color. I assumed the popsicle had discolored her stools. Her dad took her and sat on the couch with her throughout the rest of the night.
On Thursday the 18th, around 5:30 am, I awoke to another one of Morgan’s trips to the restroom. I got up and saw what appeared to me as, reddish, chunky, mucous, sitting at the bottom of the toilet. It was agreed she needed to been seen by a doctor so I dressed and took her to the emergency room to be examined at the hospital. During the admitting process, I had to take Morgan twice to use the restroom, both times with bloody diarrhea and the last time she vomited.
Morgan was using the restroom on an average of every 5 to 10 minutes, sometimes every 30 minutes. Upon entering the ER, the nurses were telling me about the pranks they had played on the attending physician throughout the evening. They had injected water into his chair and put k-y on the telephone earpiece so he wasn’t going to be in a good mood. The nurse then informed me she would wake the doctor and he would be in to see Morgan in a little bit. The nurse took Morgan’s vitals and we waited for the physician to arrive. Morgan was constantly using the restroom during the entire ER stay. The Dr. examined Morgan and told me he thought she had the flu, they needed to collect a stool and urine sample before we could go home. In the next minute Morgan had to use the restroom and a stool sample was collected. After the Dr. examined the sample by eye, he wanted a blood test as well. Morgan couldn’t pee, so a catheter was put in place to get the needed urine sample. The nurse couldn’t get this inserted, so the doctor had to do it for her. After finishing that, he left to catch a flight to another city, so another physician came into see Morgan. He didn’t examine her at all, said she possibly had the flu, but instructed me to take her home until the tests were back from the lab in 48 hours. I explained her situation to him and I was told this is common in children with the flu, to go home, and for me to keep her hydrated and as comfortable as I could. He said they would call if anything like E. coli showed up on the tests.
By 3 pm this same day, I called our local doctor concerned about Morgan. Dr. M. took my call and I started explaining to her what was going on with Morgan. The doctor voiced her disappointment for me not waiting until 8 am to call her first, before taking Morgan into the ER and was clearly upset with me throughout the rest of the call. I explained to her what Morgan’s stools were looking like and Morgan’s condition.
The doctor said she needed to see the stools for herself, and Morgan, to bring her in and she would look at Morgan’s chart from the emergency room. My family and I arrived at the doctor’s office around 4 pm. Morgan needed to go potty again. My husband Casey took her to the restroom in the doctor’s office while I filled out billing information. After Morgan had gone, Casey asked the nurse if he should flush the toilet and she told him yes and to be seated. A few moments later, Morgan and I went to the examination room.
The nurse asked the normal history information, took her temp, and left the room. Dr. M. then came into see us, and she began to examine Morgan. Morgan told her that her tummy hurt, the doctor touched Morgan’s tummy and Morgan would scream. The doctor asked me if we had been swimming lately and where. I told her yes and then she asked Morgan if any of the water got in her mouth, and Morgan told her yes. She asked Morgan if she swallowed any and Morgan told her, no, she had swallowed her bubble gum. The doctor looked confused and then told Morgan not to swallow any more gum.
The doctor went over the emergency room notes and explained that Morgan was simply suffering from the flu, that “it is not uncommon” to see bloody stools in children with the flu. I started to explain the look of Morgan’s poop and she said, “well how do I know it was blood in her stools when I didn’t get to see what was sent to the lab from the emergency room.” I then told her Morgan had just gone again, but the nurse had us flush the toilet, and she became upset with me that we did. However, I assured her Morgan would be going again in a few minutes she could see for herself then, and she did. The doctor looked into the toilet, several times she walked away and rushed right back to look at it again. She had us take Morgan to the lab to collect another stool sample for a test the emergency room didn’t order. She gave us our lab orders for the stool sample, verbal at-home instructions to care for the flu, and she would call us if anything showed up in her labs.
In the meantime Morgan was thirsty, so the Dr.’s nurse got her a cup of water to drink from, but before I could get Morgan to the waiting room, Morgan threw up clear, mucous slime on me, and Dr. M. said, “oh poor thing.” The doctor then told me I let her drink too much water all at one time, to limit the water intake all at once, to give small sips, as well as other nutritional tips to help with her flu. The doctor said she would call in a prescription for the vomiting to our pharmacy. (BTW: this vomit bleached my shirt.)
We left the doctor’s office and went to the lab. Morgan produced a stool sample moments after arriving to the lab. The lady at the lab was stunned, she expressed to us that she thought we would go home, and return later with a specimen. She expressed her concern about Morgan, informed us she had never heard of any flu with bloody stools, and thought the hospital staff were all “quacks” and commented that we ought to think about taking our daughter somewhere else. We didn’t.
By evening, Morgan was using the toilet every 15 to 20 minutes sometimes every 2 to 4 minutes, the doctor called me to let me know her prescription had been called in. I told her about the increase in the frequency to use the toilet, but the Dr. told me not to get over concerned this was normal. She explained she would be out of town until the following Tuesday, if we needed help to call her and we would be put through to her on-call doctor. Later this evening, into the early morning, Morgan began throwing up very hard, producing nothing but spit, and running a high fever. I gave her the Phenergan the doctor prescribed, but it seemed to make things worse, so I quit giving it to her. I gave her the fever-reducer prescribed to use instead. Those seemed to help with the fever, but not with anything else. I would have her swallowing water at the onset of her vomiting just so she could throw something up. Morgan would sip on water after a bout of the dry heaves (on both ends) then lay down and try to rest. Although she would to have to get back up within a few minutes to use the potty again, producing almost nothing. Morgan was exhausted, tired, and very sick. There were times Morgan would be sitting on the toilet while throwing up in the trash can. I was so helpless all I could do was comfort her.
Friday the 19th, I placed a call to the lab at the hospital to see if any test results had come in. I was informed a doctor had to give me those results. I placed a call to Dr. M.’s office to see if I could get those test results and to give the Doctor a report of Morgan’s worsening condition. The Doctor was not available! I then called the hospital and asked to speak to a nurse in the emergency room.
After getting in touch with a nurse and explaining that Morgan had been there in the early morning prior, what her conditions were at this time, and to see if any of Morgan’s lab results were in. I was put on hold while the nurse went to retrieve Morgan’s charts. The nurse told me Morgan’s tests were not finished running, that nothing was there to report as of yet. I told her Morgan was dry heaving, using the toilet on an average of every 4 minutes, she had begun rejecting fluids, food, and had high fevers at times. I asked her if she thought I should bring her back in, however the nurse didn’t think it sounded like we did. She told me there was nothing more they could do for her there in the hospital then I could do for Morgan at home. She then told me to be patient, and to calm down; if anything concerning showed up in the lab results I would be getting a phone call.
A phone call from Dr. M. came later that afternoon. She told me nothing grew in Morgan’s stool sample she ordered. That it was more than likely the flu, however she was concerned about the elevated white blood cell count in something else she discovered, but didn’t think it was something we needed to be concerned about at that time. (I didn’t understand what she was talking about.) Dr. M. went on to explain that the white blood count was probably normal anyway, to continue with what we were doing; be tough, calm down and she would be back into her the office on Tuesday. I again explained to her what I explained to the emergency room nurse, however she didn’t feel it would be necessary to re-examine Morgan until the other lab test results were back in.
On Saturday the 20th, around 10 am I again placed a call to the emergency room and spoke to a nurse. Morgan clearly needed to be seen, and “no” was not an answer I was going to accept. I explained Morgan’s worsened condition now, I wanted to know the lab results, and to know what they were going to do for my daughter. The nurse told me the result of the labs tests were normal and that Morgan should be on her way to getting better by now, so if we felt she needed to be seen to go ahead and bring her back in.
My husband Casey, Taylor, Morgan and I went back to the hospital’s ER. Morgan was examined by a nurse, in a cubicle in the waiting room to determine if she needed to be seen by a doctor. The nurse expressed her concern on how pale Morgan appeared, took her temperature, and attempted to get a blood pressure. She immediately took Morgan and I into one of the examination rooms. While Morgan was lying down, the nurse took Morgan’s blood pressure. It was low. She immediately had Morgan sit up for another reading of her blood pressure, it was elevated. Morgan was feeling dizzy so she told this to the nurse. The nurse then had Morgan stand up to do another blood pressure, and this was even higher. She asked Morgan if standing made her feel dizzy to and Morgan told her “yes.”
She asked me to take Morgan in the bathroom and collect a urine sample. I told her that Morgan couldn’t pee and on our last visit to the emergency room a doctor had to put in a catheter in to retrieve the urine sample. She informed me this would probably happen again. The nurse finished her examination of Morgan and informed me a doctor would be in soon. Morgan had to use the restroom constantly and I was now having to carry her to the restroom because she was too weak to walk by herself. Morgan continued to use the restroom, she still had the dry heaves and was now becoming cold to the touch and she started shivering and shaking.
The ER doctor came in to examine Morgan; he listened to her heart, tummy, and lungs with a stethoscope and said everything sounded fine. However, Morgan cried out in pain when he touched her tummy. He expressed his concern about her frequent trips to the restroom and asked me to collect another stool sample, and a urine sample if we could. I again explained Morgan was not peeing, and about the prior visit, so he agreed to use a catheter on Morgan if she didn’t pee soon. He told me they needed to draw another blood sample and compare it with the one from the Thursday morning examination. Then the doctor asked for the nurse to get Morgan’s medical records from Thursday morning so he could examine them. But Morgan’s medical records were misplaced and they were not found for approximately 2 hours.
The doctor expressed his concern about Morgan’s tummy hurting her the way it did, but thought it was probably due to all the bowel movements she was having and from all the vomiting. I questioned him about the amount of blood she was passing; he told me that it was a normal amount. I started questioning the doctor if Morgan could have swallowed something and it got it stuck inside her stomach. I repeatedly asked if she could be having complications from a blockage of some sort. He asked if I had seen her swallowing anything that could cause a blockage, and I told him “no.” He then went on to assure me that swallowing small objects just doesn’t cause these kinds of symptoms that she had.
I was now upset and demanded that the doctor to have her x-rayed to rule out any foreign objects before I would believe him, and I went on to explain to this man that Morgan was three and you just never could know. I “what if-ed” him with things like: what if she swallowed a small toy, change, a fork, a toothpick, three-year-olds are always putting something in their mouths; “so how we will not know if you don’t take an x-ray?” I yelled at him. Then the doctor agreed to get an x-ray of her stomach area to rule out foreign objects for mom. I started questioning the doctor and all the nurses about Morgan’s stools smelling so horrid, I compared it to a dead meat smell, like when you go hunting or go into a butcher shop.
I was told it was a normal smell. I went with Morgan to have her tummy x-rayed and they shot three views, then sent us back to our spot in the examination room. The doctor told me the x-ray was normal and with no visible foreign objects, as he suspected, although the images of her bowels showed that they were inflamed and he said it had to be from all the activity due to the diarrhea.
The blood work came back, this now showed a change in the levels of her red and white blood cell since her last test on Thursday. The test results were showing that Morgan had became severely dehydrated since the last visit, and now she would need an I.V. The doctor and the nurses were hoping this would help her and then she’d be able to pee.
I informed the doctor about the visit on Thursday afternoon with our physician, Dr. M., and informed him what she had told us and about the additional tests she had ran, all the medications she had prescribed for Morgan to use, and what I had been giving her. He excused himself to place a call to Dr. M. then he returned to inform us that Dr. M. was out of town, so her on-call doctor would be coming in.
Now this doctor that took the place of Dr. M. looked Morgan over, turned her I.V. flow down then looked over her medical chart. Then he flat-out informed me he was not qualified to treat our daughter and that she needed to be seen by the area’s local pediatrician.
So now the pediatrician arrived and started to ask me a few quick questions, like was there any heart disease in the family, or diabetes; discussed my pregnancy and delivery, if she was early, on-time or late with the due date. Then he asked if we had eaten any hamburger in the last 2 weeks or swam in any water. He asked about the overall health of Morgan and if she was normally a sick child, her last illness, what antibiotic had she recently been on.
He then started to examine Morgan and her vitals informing me that Morgan was in acute renal failure. He excused himself to make a call as he informed me that he would need to speak with a colleague in Seattle to confirm this and that he would be back in a few minutes. This is when I went and retrieved my husband from the waiting room to hear all this. After the doctor returned from placing his call to Seattle, he told my husband and I the blood test showed her red blood cells were down and her white cells were way up. Explaining to us that Morgan had hemolytic uremic syndrome or HUS, and not the flu and that Morgan had to have recently been exposed to E. coli. (HUS? E. coli? What on earth are these words? We had not one clue to what this doctor just told us!)
The doctor and his colleague in Seattle both agreed this is what Morgan was suffering from. I told him that Morgan did not test positive for E. coli in her lab tests, so how could this be? It was then explained to my husband and I that HUS is a very common illness in that area, especially in fair-skinned, blue-eyed children. But not to worry, for they see these cases all the time and telling us that, “Kids are strong, they bounce right back, don’t worry.”
He explained that Morgan had to have come into contact with E. coli somewhere in the last few weeks to have developed these symptoms. I asked him if it were possible for something else to be wrong, like a blockage, or some other stomach problem, or a severe flu becoming dehydrated from that. With each question I would ask, he would tell me no, she was exposed to E. coli. After all, they see this all the time!
He went on to explain that Morgan would need to be flown to the nearest children’s hospital and be put on a dialysis machine to get her kidneys going again. The hospital facility we were in was not equipped to take care of her. We began to ask if they would send us to Utah’s Primary Children’s Hospital for her medical treatment and dialysis so that we would be closer to our home town with family and friends there to be with us. However, we were informed that going to that hospital was not an option, and the plane wasn’t equipped to take us there anyway. I was then told one of us could fly with her, whoever was going needed to be back to the hospital in 2 hours when the life flight team would be in to get Morgan. He then slowed the flow on her I.V. drip and left.
A few moments later a nurse came in to insert a catheter to monitor Morgan’s urine output, if any at all. In the first attempts of trying to insert this, it was decided the catheter was too big, and the nurse was going to need something smaller. When the nurse attempted to insert this smaller catheter, she kept putting it in and the catheter would fall back out. This happened maybe 3 times, she made one more attempt to insert the catheter and kept shoving more and more line inside Morgan, she realized she missed the hole and was shoving the catheter into Morgan’s vagina. Her exact words were, “Oops, wrong hole”. She looked sympathetically at me and then explained it didn’t matter as that happens all the time. She then made another attempt and was not successful, this being in Morgan’s vagina just moments prior. I immediately left to pack and returned around 9:00 pm to fly with Morgan to the hospital in the nearest city.
The life flight unit arrived to take Morgan and I to the airplane that was waiting for us at the airport. Its staff seemed surprised at Morgan’s conditions and commented about how sick other children are, as well as displaying much more crankiness and restlessness than Morgan was. They told me a Dr. R. would be waiting for us at the ICU unit, and he would go more into detail about what HUS was and the treatments Morgan would be needing. They also explained that a nephrologist would more than likely be called in to examine Morgan to begin her dialysis treatments. I asked what a nephrologist was and they kindly explained to me, a kidney doctor. Michelle explained that HUS can cause kidney problems, but that was in the worst cases she seen, she told me that some children require kidney transplants, but she was sure this was not Morgan’s case for Morgan clearly wasn’t as sick as the other children these two had seen. We arrived to the Children’s Hospital around 11:30 pm Saturday the 20th.
Sunday the 21st. Upon arriving to the ICU, a Doctor R. met and consulted with me on HUS. He explained that HUS is not pretty, that kids get very crabby. He explained that all HUS patients’ kidneys fail; needing dialysis for a few days or a great length of time, and some even need a kidney transplant. He explained to me that 95% of all HUS patients recover with no lasting, long-term effects, while the other 5% fall into the long-term kidney dialysis, or kidney transplants, and at worst suffer from a stroke causing brain damage. As he was examining Morgan he didn’t think she’d have any more problems other than a few days on dialysis to get her kidneys going again.
He expressed how Morgan wasn’t even as cranky as other children that are brought in and that Morgan looked good, healthy, strong, probably one of the best HUS patients he’s ever had admitted. He went on to explain that a team of nephrologists would be in to get Morgan ready for dialysis, and then started to explain the possibilities of a blood transfusion while she was on dialysis. I didn’t fully understand, but he explained to me that HUS breaks down our red blood cells and that Morgan was going to need more.
Again I started questioning this doctor to see if Morgan could possibly have something else wrong with her besides HUS, like a stomach problem, a blockage, a swallowed toy, something else that could be the cause of her being sick? He told me no, Morgan has all the classic signs of HUS. He even told me that this illness is very common in the area, not to worry, many kids are admitted with it each year in that hospital and that Morgan would be just fine. He began to asked me about our family history; did diabetes run in the family: yes, did Diverticulitis or Crohn’s disease run in the family: I told him I didn’t know, in fact I didn’t know what that is, any history of heart problems: yes. I also told him that we didn’t know about my husband’s father’s side of the family, as he is adopted. I asked him about testing Morgan for something else other than E. coli, and was told that is what she had to cause the HUS. I was now expressing concern about Morgan and her stomach hurting, having diarrhea since very late Wednesday (well very early Thursday morning) and the events that took place in Hermiston. He was concerned about her not being admitted when I first took her to the hospital, but assured me no damage was done to her other organs. He said no, Morgan had HUS, from E. coli. I told him she tested negative for that and he told me it didn’t matter. He left, and I waited with Morgan for my husband and other daughter to arrive.
Casey and Taylor arrived to the hospital around 3:00-3:30 in the morning. Morgan was stabilized and settling in, she was finally starting to rest. Her blood pressure was high and she had an increased heart rate. Doctor R. again came in to evaluate Morgan, and visit with Casey. He explained the blood pressure and heart rate were all normal symptoms and it was being monitored. We, Casey and I, again asked if Morgan could have something else wrong with her, wanted to know why her bloody stools and breath stunk so bad. Again we were told that is all normal. I then asked if they would do exploratory on her because I felt something had to be wrong with her stomach, intestines. Dr. R. said to us, “She doesn’t need it and I don’t want put her through an unnecessary procedure, when your daughter simply has HUS.”
Morgan’s first night nurse in ICU was Scott. He monitored her vitals and checked in on her every 5 or 10 minutes. He made Morgan feel comfortable about having to wear special hospital pants, and assured her she would be out of those in just a few days after they made her all better. That is what he said to Morgan. Scott explained to me bloody stools were common in all HUS patients, and it goes away after a few days. Once that happens, Morgan would be on her way to recovery. Morgan would always ask for something to drink, she was thirsty, but she wasn’t allowed any fluids, she had to wait.
Dianne and Sharon were Morgan’s day nurses now. Around 8-9 a.m. a nephrologist and some doctors came to assess Morgan. They explained about dialysis and why she needed it. He determined she would need a few runs, days, on dialysis to get her kidneys functioning again. He even told us that Morgan was healthier than other HUS patients he’s treated, and he guess maybe 2 or 3 treatments was all that it would take. I started to ask if Morgan might have something else wrong with her. I explained my concerns about her stomach hurting, the overeating of the candies, cherries, bubble gum, or the possibility of swallowing a toy. And again to be told it couldn’t be from any of that, after all did we see her put anything in her mouth? No. Taylor then spoke up and told them that Morgan was swallowing coins, a dime, and a few seconds later, she also said she had swallowed a penny. The doctor assured us coins of that size wouldn’t cause any harm, they are easily passed and for us not to worry that anymore. At this point I had to give in, Morgan must have been exposed to the E. coli to make her this sick. I’m only educated in being her mother, so they must know what they are talking about. After all they are the educated ones in medicine, I was just her mom!
Morgan was prepped and prepared for dialysis. She had a central line put in her right thigh, a PICC line put in her right arm, then she was x-rayed to make sure all the lines were in the correct place. She began her first dialysis treatment in the early afternoon. Morgan was on the machine approximately 2.5 hours, and her dialysis nurse was Robert, I believe. Morgan was so thirsty before the treatment began, and had been ever since we flew in, that they now allowed her to drink as much fluids as she wanted while she was on dialysis. Morgan had a glass of ice water, two glasses of apple juice, and began another glass of water.
After her dialysis treatment, her dad and I started noticing Morgan was swelling up and looking very bloated. We brought this to the attention of Morgan’s ICU nurse, and the kidney doctor came back in and examined Morgan. Morgan was also having a high heart rate along with her continuing high blood pressure. It was ordered that Morgan was to have no more fluids to drink, and that the excessive fluid retention would be removed the following day by dialysis. Again we were told this was a common side-effect from having HUS, not to worry. By evening, Morgan’s stomach began to enlarge, and she was now screaming if you would barely touch her stomach. Just re-positioning her on her bed, or changing a diaper, would make her scream and breath really hard and fast.
Morgan would constantly tell her nurse that her stomach was hurting. And we were told to wait it out until the following day. Morgan became very thirsty, her lips were dry and cracking, and her anus was looking swollen and raw as she was still having a bowel movement every 5 to 10 minutes. We got her some Desitin from the nurse, and I used it on her lips. And a sample of some other cream of vitamins, like A and E, was given to use on her bum. Morgan was restless throughout the night, and she would try to sleep. She would get just about relaxed and then have to go potty again, or the nurse was in to check on her, or help us change her pants.
Monday the 22nd. Morgan was evaluated again by a nephrologist named Dr. A., as well as an ICU doctor by the name of Dr. L. It was ordered no more fluids, Morgan was to have the excess fluids removed by dialysis today and receive her first blood transplant. Morgan was typed and cross-matched, they said Morgan was A- with a negative RH factor. Nurse Betty was Morgan’s dialysis nurse today, and she removed 750 cc’s of excessive fluid from Morgan during her treatment, and about half-way through the treatment, Morgan had her blood transfusion. Betty explained the purpose for having to give her more blood as the HUS was destroying Morgan’s red blood cells and that again is a common symptom, not to worry. I offered my blood, but was told I couldn’t give, in case she needed my kidney, or her body would not accept the transplant. We were told Morgan had lost a lot of red blood cells throughout the night; this is why she was receiving a transfusion. All the while, Morgan was still having bloody bowel movements on an average of 5 to 10 minutes. Her anus was swollen and raw looking, and we were to use the Desitin on her bum to help with the “rash.” Her stomach stayed swollen and bloated looking, even after having the dialysis treatment. She was still in pain, and you could hardly touch her without a big scream. Morgan was also dealing with the high blood pressure and a high heart rate. Morgan was on room oxygen, with an oxygen tube thing with a plastic cup. Laying this by her head to help her breath. Morgan was now given medication to control her high blood pressure, but her high heart rate that fluctuated between 150 & 170 wasn’t a concern.
That afternoon, Morgan was lying in her bed, restless, making a horrible swallowing noise. I thought she was going to throw up, and she did, it was now a green fluid, before the nurse or I could get to her. Morgan couldn’t turn her head, or move and sit up, and I panicked at the thought of her choking on her own vomit. Sharon got a suction wand going and told me to calm down. With each round of vomit, Sharon would suction out Morgan’s mouth, and finally Morgan quit. I was now crying, clearly my daughter wasn’t doing too well. Sharon at this point told me never again to panic or show fear in front Morgan again, and if I had to cry, to turn around or leave the room. Morgan was still thirsty, so she was allowed a few ice chips every now and again, or a water soaked sponge.
Morgan’s evening ICU nurse and I didn’t hit it off at all, especially when she slapped Morgan’s arms down just to put on an oxygen nose cannula. Morgan’s oxygen was dropping down in the 80’s, so she needed this on. Casey told Morgan to listen, and to keep that in her nose. He left the room to find a doctor to complain, and I stayed in the room. I asked the nurse if she liked working with children, and her reply was, “well obviously, or I wouldn’t be working here at this hospital.”
When we needed her help with Morgan, she wasn’t outside the room. We’d have to go find her… She left us on our own for most of the night.
Tuesday the 23rd. Morgan was going to have another dialysis treatment. This now is her 3rd. When Betty arrived to begin, she expressed concern about the color and size of Morgan’s stomach, now turning to green. We were told the green on Morgan’s lower stomach was just a bruise; it was probably caused from the central line. Betty removed the bandage from the central line to clean the area, and then she reapplied a fresh dressing. Explaining why it is important that the line doesn’t get contaminated, as Morgan could get an infection. This central line is approximately 5 inches from Morgan’s vagina, and butt. Morgan started having nosebleeds, and we were told it was from the oxygen. Morgan had bloody movements on the average of every 5 to 10 minutes, and the central line area was always in the way. Morgan’s diaper was always rubbing up against it, but it didn’t concern any of the doctors or nurses. Betty did Morgan’s dialysis, and removed another 50 cc’s of fluid from her. After her treatment, we noticed a drop of red fluid in her catheter, and we all got excited. The nephrologist examined Morgan and we were told Morgan was doing much better; she was going to be transferred to the regular pediatric unit. We were told a few more weeks of dialysis and Morgan would be going home. Morgan was still having problems with high blood pressure, receiving medication for this. She had been running a low-grade fever and she was now taking Tylenol for that. Her high heart rate was still the same, in the 150’s to 170’s, we were told that was normal, not to worry. She was now breathing kind of funny, like panting, but it wasn’t a concern. And her vagina was becoming swollen, and her anus was still the same. Around 4 pm, Morgan was taken to the pediatric unit, and we followed her to her room. She was put in this room, without the monitors like in the ICU, and we were left to wait for a nurse to come in and check on her. We were now changing Morgan’s diapers on our own, as she was still passing bloody material every 5 to 10 minutes. The nurse came in to check on Morgan, and she explained how busy she was, and she was running behind. Her name was Melanie, I believe. She hooked Morgan up to a different I.V. machine, and allowed Morgan to have her ice chips and a medicine cup size of apple juice. She was allowed one or the other every hour.
On Wednesday the 24th, Taylor, our friend Elaine, and I left early in the morning to go to the house and pack some personals and clothing for Morgan’s hospital stay. My daughter Taylor would then go with Elaine to Phoenix on Saturday, until Morgan went home. Casey would be going back to work, and he would come back on his days off. This was the plan.
Casey’s Notes: Morgan’s bloody bowel movements seemed to slow down and almost came to a stop around 10:30 am. Morgan’s heart rate and blood pressure began to rise when the bloody stool movements almost disappeared. The nurse then brought in another type of cream, it was a prescription type in a jar, and we were to use this on Morgan’s bottom. She explained this would stop the deterioration around Morgan’s exit area. A colon doctor came in to examine Morgan’s stomach. Every time this lady would touch Morgan’s tummy, Morgan would scream out in pain. The doctor explained her concern for Morgan and was worried her intestines might have begun to telescope.
I was told this is when the intestines swell and fold inside each other. I told the doctor that Morgan always seemed to be bearing down as if she had to go to the bathroom, but nothing to little was coming out. She told me this is normal because her intestines were swollen from all her bowel movements, and that makes you feel like you have to go to the bathroom. I asked her if it looked like Morgan was pushing her insides out. Again she said it was normal, and it could be fixed by pushing them back inside. But if they became severely protruded then surgery would be required. She said, “We’ll just have to worry about that later.” The doctor then told me that she wanted a sonogram done on Morgan’s stomach, and then she left.
When the nurse came back in the room, I pointed out that Morgan’s heart rate and blood pressure were, what I thought, to be way too high. Her heart rate was in the 160’s and bouncing up to the 170’s and her blood pressure was in the 140’s. The nurse told me that wasn’t that high, and I told her it was in the ICU as Dr. B. had said the 150’s was too high for her heart rate. That when her blood pressure was 140/90, that’s when she began to start her high blood pressure medicine. She just listened to me and didn’t seem too worried. After a while, Morgan and I had visits from assistant doctors, and trainees, they all wanted to touch Morgan’s stomach, and Morgan would scream in pain.
In the afternoon a sonogram technician arrived to Morgan’s room. As she was performing the sonogram on Morgan’s stomach, Morgan would scream out with pain, and she was hurting with every push of that camera. The technician finished and left. Shortly after the technician left, a radiologist showed up with another lady and they redid the sonogram. The radiologist then told me that Morgan didn’t have any telescoping of the bowels, and then left. I noticed during Morgan’s last sonogram that she was pushing with her feet. I looked and noticed that she was caught up in the catheter line and when she was pushing out her feet she was pulling on this line. So I untangled her foot from the catheter while the radiologist was doing the sonogram.
When the radiologist was leaving Morgan’s nurse came in. I was now changing a diaper. I told the nurse what had happened to the catheter, and asked her to look at Morgan’s vagina area. It was very swollen and I had thought she pulled out her catheter. The nurse glanced over and said, “oh no, the catheter has a balloon on it and it wouldn’t come out”. I said, “but doesn’t her vagina look swollen to you?” So the nurse fiddled with the catheter and she didn’t seem to worry. When a lady that does vitals came in she was concerned with Morgan’s breathing and her vital signs. But the nurse didn’t seem concerned with that either. Throughout the day the nurse had to come into Morgan’s room, time after time, to shut the alarm off on Morgan’s I.V. She even showed me how to silence it so she didn’t have to, but I always made her come and do it herself.
On Wednesday, I also remember the nephrologist. She asked me if they had done a sonogram, and I told her yes, twice, and the radiologist had told me Morgan didn’t have a telescoping bowel. I remember asking her about Morgan’s vital signs. She told me they were high, but that is just part of HUS.
I remember Morgan’s PICC I.V. being stuck up under her. When she moved her arm it pulled and snapped the I.V. apart. The nurse responded after 10 minutes, after I called to tell her with the call button in Morgan’s room. She came in, shut the machine off, and said she had to call in the team that puts those PICC lines in. She left to make that call, and a little bit later the pick nurses showed up. They examined the damage to the PICC line and I.V., and told Morgan’s nurse she could have fixed it because where it broke was only connected to the I.V. line, and not the PICC line itself.
Shauna’s notes: When I arrived back to the hospital around 8 p.m. Casey was changing Morgan’s diaper. I noticed her vagina was very swollen now. Casey told me the nurse was aware of this, not to worry. He left to sleep at the Ronald McDonald House with Taylor, and my mother stayed in Morgan’s room with me.
Thursday the 25th. Around 4 am, Morgan began to throw up. It was dark deep red, blackish, and I called in the nurse. She helped me clean her up and left. Around 6 am, Morgan again threw up this blood. It was much more than her last one, I called in her nurse, and she then left to call in a doctor. She came back to help me with Morgan, and now Morgan was losing an enormous amount of blood with that bowel movement. She overfilled her adult-size diaper and blood ran all over her bed. An x-ray unit came to Morgan’s room and I was told they were making sure Morgan’s PICC line didn’t get moved when she broke her I.V. the day before. It had moved a few centimeters and that it was just fine. After a while a colon doctor arrived, a Dr. G, and he listened to Morgan’s stomach with a stethoscope, and explained that he needed to do a rectal exam on Morgan to make sure she didn’t have any telescoping going on the inside. He examined her rectum with his little pinky, and told me nothing w0as wrong with her, and she wouldn’t need any surgery.
The nephrologist came after he left, and explained that Morgan would need dialysis today, but because Morgan was an isolated patient she would have to go back in to the ICU to receive this treatment. I called my husband to tell him what was going on. Upon arriving to the ICU, Morgan again threw up blood and the doctors decided she needed a tube put down her nose to her stomach to drain out the blood. A special nurse, I believe Michelle, put the tube in Morgan, and instantly they drained out 1 liter of blood from Morgan’s stomach. Her kidney doctor, Dr. A., looked stunned, and walked around Morgan’s bed to examine the amount of blood in the canister. A lab test revealed that Morgan had lost a lot of blood since the day before and she would need another blood transfusion, along with her dialysis treatment. A sonogram was done and it showed Morgan now had fluid around her heart, but that was normal. I yelled out,”what else is going to happen to my daughter before she is allowed to get better?”
Morgan was now becoming delusional; she was shaking violently and screaming at the slightest touch. We noticed her nose tube stopped draining, so we told her ICU nurse. She came in and flushed it out and it began to work again. We asked her what would happen if that quit working and no one noticed. She told us Morgan’s belly would fill up with blood. When Betty, the dialysis nurse, showed up to do Morgan’s dialysis, her face was full of concern. She called out to the nurse to get O blood for Morgan’s blood transfusion. I interrupted her on that as I thought Morgan was A- with a negative RH factor. Betty said, don’t do that to me Shauna, Morgan is O. She expressed her concern about Morgan’s condition compared to Tuesdays as she said it was clear Morgan was much more sick.
The ICU doctors were not concerned, nor were the nephrologists. I asked them about her swollen vagina, and appearing more so on the right side than the left, and the discoloration on her stomach, but they told me not to worry. Betty then began to dialyses Morgan, and never left her side. After Betty finished with Morgan’s dialysis, the ICU nurse came in to give Morgan a sponge bath and clean up all the blood from her bed. After Morgan had her bath, and all the blood cleaned from her hair, the nurse and I tried to put a gown on her, but it wouldn’t go on with all Morgan’s tubes. So I gave Morgan her blanket, and covered her up. Morgan appeared to get worse after her dialysis treatment. Something had to have gone wrong. We again noticed the tube was plugged that was to drain the blood out from her stomach, and called in the nurse. It was flushed and again began to work. Morgan was becoming very restless and couldn’t lay still I her bed. She was still shaking very violently, and the ICU nurse had me sit in her bed, behind her, with Morgan between my legs. I then began to comb out her tangles as Morgan lay against my tummy. Morgan would slip down my body and I’d have to move her up, and she would scream so loud. She was now starting to pet her cat and call out his name. She even talked to her sister, but she was in another room. She would call out for her dad, or me and we would tell her we were there.
As the evening came, her nurse Lara didn’t like her O2 levels and decided Morgan would now need a face mask to receive more air. I was on one side of her, and Casey was on the other throughout the night. Morgan became very restless, shaking, shivering, seeing things that were not there, screaming to get the spiders off her, and the face mask was too big for her, so she was always messing with that. We asked to see a doctor to get Morgan a sedative, but it was denied. Later that evening Dr. G. came in to re-examine Morgan. He told us not to worry, this is normal. I got pissed and demanded she got something. He told us she needed to be monitored in case she had a stroke in the night, that they needed to monitor her mental status and Casey and I asked what they would do if she did? As usual, they’d just monitor her, and make sure she didn’t need surgery.
“Surgery?”, I asked, “What are you going to do surgery on in the middle of the night?” I was now telling him that Morgan had not had a full hour’s sleep since the 18th, and according to my grandma’s old wives tale, chicken soup and lots of sleep is what you need to get better. How was Morgan supposed to get any better when clearly she wasn’t able to rest for 2 seconds, let alone fall asleep? He went off on me and told me how he hadn’t had any sleep in 2 days, and he was functioning just fine. But that he would look into something for her, like Benadryl, and asked how did she do on that. I told him she never had that, but it makes me climb the walls. So it was agreed that Morgan would receive .05 of Versed to help settle her down. This was around 9 or 10 pm. Later that night the ICU nurse suggested that I get in bed with Morgan and have her lay up against me. She helped me get in the bed. And I lay next to Morgan trying to keep her warm. The nurse checked all Morgan’s vitals and left the room. The medicine worked for a little while, but Morgan just lay there. She was shaking so hard, shivering and she was cold. Morgan now couldn’t talk. She could only squeeze my finger and she wouldn’t let go.
Friday the 26th. I remember the nurse coming in to check Morgan’s vitals around 1:30 am Friday morning, she forgot to examine the drain tube, and left the room. I was left in bed with Morgan, and Casey was on the back bed now sleeping. I was humming silly little lullabies to Morgan, rocking my body with hers, and we eventually drifted off to what I thought was sleep.
Around 2:45 am, Morgan’s nurse shook and woke me, telling me Morgan vitals had dropped to get out of that bed. In seconds, a rush of nurses and doctors ran in and began performing CPR on Morgan. Casey now awake, we both were in the room watching, I was screaming and crying. After she was revived, Dr. R. had her x-rayed, and Casey and I stayed in the room next to her bed when they took it. Dr. R. told us she was only gone a few seconds, they were going to run more tests to see what was going on. Casey asked him how this happened, and Dr. R. told us she had aspired on her blood. We asked how that could happen when Morgan has a tube to drain out that blood. The nasal tube was examined and it had plugged, and that is what caused this, he said. He showed us her x-ray, and her lung on the right was full of blood. Dr. R. then put a tube through her chest to drain that out. Morgan’s nurse was busy with all the IV’s, and I kept asking her about the nose tube, and she would say, “oh yea, I’ll get to that in a minute.” I asked again 10 minutes later, and she said, “Oops, oh yea I forgot, let me do that now so I don’t forget again.”
Morgan received another central line in her left thigh for blood. An echogram was performed in the ICU unit and another set of x-rays, with her father and I with her at bedside. The echogram showed Morgan had fluid collecting in the sack under her heart and that she would possibly need that tapped off to keep her heart from collapsing in, or somehow keep the fluid inside her heart full to prevent collapsing. A decision was made to take Morgan to have a CAT scan of her brain to check for damages. She was taken for this procedure around 4:30 in the morning. Casey followed her to have this done and I ran outside to make phone calls to our friends and family to let them know of Morgan’s condition, and to pray and cry.
Upon returning from CT scanning and my return to the ICU, Morgan’s doctors were ordering dialysis and a blood plasma transfusion in case she needed surgery. The nephrologists were arguing what dialysis treatment would be better for her at this point, 2 to 3 hour dialysis compared to 24 hour dialysis. A sonogram of her stomach was performed and we were told nothing was wrong with her stomach except for air and her lungs showed fluids around the lungs. Morgan was put on a ventilator after she went into code, and drugged heavily. It was explained she was in a medical induced coma to us and she would be out of it for a few days until she got stronger to come off all the machines. Morgan could respond to pain by making a fist with her left hand. Around 6 am, I was with my husband and a surgeon right outside Morgan’s room when a nurse came running out and grabbed me, pulling me back into Morgan’s room telling me that Morgan had somehow woken up and I needed to be there by her side.
The surgeon we were talking to had taken one look at our daughter from outside her ICU room and determined she needed surgery right away because her colon had died inside her. He never did an examination on her; he just looked at her lying there naked, spread eagle, lifeless, and on a breathing machine, when he made that decision. This is the same surgeon that looked at her on Wednesday and said she didn’t need surgery, she was fine. The only thing that changed on Morgan from Wednesday to now was she was lying down flat, naked, and on a ventilator. Her stomach was still distended and green in color, and her vagina was still protruding. Why didn’t she need this surgery on Wednesday? On Monday when all this started to appear? When we asked in the beginning to do exploratory to find the problem, why were we told that was unnecessary to put her through?
During my few short moments in the ICU room with Morgan when Morgan miraculously woke up from a medical induced coma. She took my finger in her left hand squeezed with what she could and tried to focus her eyes with mine. Call it a gut feeling, but I just knew the Lord was there and He was taking her home. I talked to her as much as I could, reassuring her she’d be okay, to be strong, and how much we all loved her, to keep fighting as much as she could. The doctors had found a way to fix her to fight. Crying hysterically now, I told my baby if the pain got too bad, not to be scared or frightened, that she would be okay. I told her to take the Lord’s hand and walk with Him and he would take good care of her if the pain got to bad for her here.
Oh how I told Morgan how much I loved her and that I would miss her terribly, but we’d be OK and not to worry about us if she had to leave. I knew in my heart that Morgan was going to die so I had to let her go. I’ll never forgive myself for telling her it was OK to leave. You see I forgot to tell her that once she took the Lord’s hand she couldn’t come back!
A few minutes passed and Morgan drifted away while holding my hand, her heart had stopped beating once again. A rush of doctors rushed in again and started to perform CPR again on her. That would be the last time I would ever get to speak to my daughter and physically love her.
As they began reviving her again, I ran out of the room screaming. Asking her nephrologist if I needed to start making arrangements for Morgan, and she told me, “heavens no, what you see here is just temporary, she’ll be just fine Shauna, Morgan is going to pull right out of this.” She hugged me and then left to catch a flight as she was leaving for a vacation.
At this point the surgeon was making Casey sign papers before he would perform surgery on Morgan, explaining that she needed a colonoscopy. He counseled us on the operating procedure, and the possibility of having a “bag” for a colon for the rest of her life at worst. I then yelled to quit discussing things and get them done, to save my baby. It was around 9 am or so when Morgan was rushed to the operating room. We were not allowed to go, so they put us in a private room to wait. I was given half a Valium to calm my nerves down, and told to take the other half if I needed it later. I knew I would.
At five minutes to 11, the door to the room we were sitting in flew open with all the doctors rushing in. Dr. L. told us, “Morgan died, we’re so sorry.” Casey asked what happened, how could this be? The surgeon told us Morgan was in full code during the entire operation. He went ahead and performed the surgery, removed the right side of her colon that had indeed died inside of her. He went on to explain that if they had done something sooner she’d could’ve lived a normal life with the other part of her intestines as they weren’t damaged. He told us the section that was removed was sent to pathology to hopefully find the cause of damage. Dr. L. then asked if we wanted the rest of her autopsied. I said, “God no, leave her alone, she’s been through enough don’t you think?”, and Dr. L. replied, “Yes she has, you’re making the right decision.”
I asked to go see her and was told it would take a while to clean her up and get her ready then she’d be brought back to the ICU room for us to spend as much time with her as we needed to. Casey called the Ronald McDonald House and told my mother to bring Taylor to the hospital; we needed to talk to them. They arrived in no time at all and Casey and I had to tell Taylor what had happened to her little sister. I saw the love of life leave Taylor’s eyes at that very moment, looking at me as if I should have done something to stop this. We all were allowed to our own time with Morgan who now lay lifeless on the same bed she died for the first time while laying in my arms. I took my sweet, precious baby up in my arms and held her so close, it just didn’t seem real. I then sat with her in a rocking chair for eternity it seemed, rocking away and telling her how sorry I was for not being able to fix her. The tears were flowing in everyone’s eyes, and I swear to it they were flowing from Morgan’s too.
In exchange for her life the hospital gave us a memory box to put her special things in to take with us. Somehow that just didn’t seem fair, a box for a life! We took her handprints and a lock of her beautiful hair to put in this box. We then left the hospital. Hours went by and I just knew something was wrong; we had to know what happened to our baby. So I had Casey call to have an autopsy performed on Morgan. To this day we still don’t have a positive test result on E. coli or any other food or waterborne bacteria. Morgan died from – according to the death certificate – Acute Renal Failure, sepsis, septic shock, a bowel infarction, and HUS. This HUS was the causing factor for all of her complications that lead to her death.
Morgan Alayna Dockter was laid to rest on August 2, 2002 in the town in Wyoming where she was born and raised; in a town where life goes by so slow and life is so simple. We had moved to Oregon the last week of March 2002.
We moved away from Oregon the last week of September 2002. Feeling we had to leave for the safety of our other daughter.
Now back in the town where all of our family has been born and raised, a place of safety, Home. Never will we leave here again!
Morgan’s Story: As told by her mother, Shauna
I wrote these details out 3 days after Morgan died, and before we buried her. I didn’t want to forget, not one thing.
