It hurt so bad. I was so afraid. I just wanted this nightmare to end.
It was March 15th and I took my 2 1/2-year-old daughter outside to swing. It was a beautiful spring-like day and her laughter filled the entire backyard, in fact, it filled the whole neighborhood. I couldn’t help but stare at her and hurt with the love that I feel for her. You see, one month ago, I didn’t think I’d ever hear her laughter again.
It was February 5th when she woke up with diarrhea, no big deal — the flu. After her nap that day she had a temperature. Of course, my husband, Troy, was out of town on a wrestling trip, which always adds a little more stress. That night she woke up a couple of times to go potty and she had terrible stomach cramps. Cramps bad enough that she laid on the bathroom floor and wanted to sleep there, not wanting to move or be touched, but not crying — not once.
From the very beginning of this I was a wreck. Two weeks earlier my husband was in the hospital with stomach cramps and bloody diarrhea; he had had E. coli O157:H7, one mean bug. During that time, my four-month-old son, Drew, also had had diarrhea for two weeks, but his tests for E. coli were negative both times. He also got very sick with some vomiting and fever — the flu, they told me. He seemed to be getting better on his own and since it had been two weeks since Troy had been sick, Madi couldn’t have E. coli. Seems like too much of a coincidence, doesn’t it? It was.
I had done research when Troy was in the hospital. I knew that this could be very dangerous for children because it could develop into a very serious, possibly deadly disease called hemolytic uremic syndrome. A disease caused by the toxins of E. coli that in some children can cause kidney failure, blood problems, and possibly death. The good thing was that this was a rare disease, only 5% would develop HUS. Numbers, unfortunately, have never been our friend.
Back to Madi. Sunday and Monday were more of the same — diarrhea and fever. I was in constant contact with her pediatrician who knew all of the circumstances and had also treated Drew. He constantly reassured me that all we could do is watch her and support her, even if it was E. coli, and HUS wouldn’t show up until seven days after the E. coli. Watch and worry, that’s all we could do. She was drinking her juice well and playing some, so we were just hoping for it to go away soon. Monday night she began throwing up too. She still had terrible cramps and spent a lot of that night on the bathroom floor. Many times during the night she would be sitting on the toilet, sleeping on one of our shoulders, lifting her head only to occasionally throw up. It was a devastating sight, knowing there was nothing that we could do for her. By Tuesday morning, after basically being up all night, her symptoms had only seemed to have gotten worse and now we had no way to keep Tylenol in her for her fever either. We contemplated calling the doctor again at about 4 a.m., but waited a little longer for our deciding factor. It came about an hour later when she had blood in her stool. Probably from all the diarrhea the doctor said, but bring her in around 8 a.m. It was then that we checked into our first of many hospital rooms.
Still, I believed or hoped, that it was a bad flu bug. After all, E. coli usually didn’t involve a fever — and hers was really high. Yeah, she would be fine. They drew some blood and got her hooked up to an IV. A little dehydration, no big deal, this happens all of the time. I prayed more than once that day that this all go away soon. Seeing her this way was killing me. Daddy came soon and all of our family visited that day. Things didn’t change that day and eating and drinking were becoming a thing of the past. She couldn’t keep anything down, not even water, not even the sucker that the doctor brought in for her. Troy and I took care of her in the bathroom all night long. It hurt us so bad to see her sleeping on the toilet. I prayed so hard that night for it to go away, Please Lord, help my baby feel better.
Wednesday brought more of the same. We all watched and prayed for a sign that she was improving, hoping for a bite of banana or a Cheerio to stay down. It never did. Troy went to work for awhile that afternoon and that’s when I got the bad news: she had E. coli. I freaked, not that in the back of my mind I didn’t know, but now hearing it seemed so frightening. Especially since she was so sick and didn’t seem to be getting any better. Troy came quickly, along with our families and the doctor to assure us that we were doing everything we could for her. Supportive treatment, keep her hydrated, that was the key. We still knew that HUS was a possibility and that it wouldn’t show up until a week after her symptoms, but only 5%, no not us.
That day brought us more bad news. She had pneumonia setting in. She had to go down for a chest x-ray, which got her very upset. She hated to be messed with, not to mention we had to visit the bathroom several times for her diarrhea while we were there. She started breathing treatments that day. She was so irritable that even those were heartbreaking. There were so many times that as soon as the nurses would walk in she would say that she had to go potty, just to escape them. She was also refusing Tylenol because it would make her throw up, so I backed her and refused it too. She sat with a temp. of 102 that day.
By Thursday we were all feeling very exhausted with little or no sleep at night. Drew was staying with Troy’s mom and I was missing him, so I had planned to go visit him that day. I was afraid that I’d give him the bad germs so I showered-up early that afternoon and left the hospital for the first time in two days. What I thought was going to be an escape from the stress, turned out to bring me more. He had a terrible cold and had had diarrhea all day. I tried to show him happiness, which I’m sure I didn’t do very well, but we played for awhile, then I headed back to the hospital with a stool sample from him. The doctor, being concerned with Madi too, told us to bring him in for observation that night. We were pretty sure that he had already had E. coli for two weeks but hadn’t gotten quite as sick. Now he also had bronchiolitis. They started breathing treatments on him right away and put him in the tent. Madi was so very sick and irritable that she wanted Troy and I there at all times so Troy’s mom had to stay in with Drew that night. I didn’t even get to be with him for his blood draw or chest x-ray. I told Troy’s mom that night to try to handle it, I didn’t want to hear him cry and not be able to help. Since he was across the hall, we kept both doors closed for the night. We were still afraid to give one of them something that they might not already have had. I thought I was at my all time low that night. All of our family was there, parents, brothers, my aunt; everyone was so concerned. At that point, I lost it! I ran to the chapel to pray for my babies but it was locked. I dropped to my knees sobbing. It hurt so bad. I was so afraid. I just wanted this nightmare to end.
When I had finally gathered myself, I went back into Madi’s room where she was throwing up bright-green bile. I freaked once more knowing that this couldn’t be normal. The doctors and nurses told me it was normal for a child that had been sick this long. Well, would she ever get better? Stop throwing up? Having diarrhea? Would she ever eat again? I was so scared. Guess what? Unbelievably, it got worse.
Troy and I started talking to the doctor about transferring to Blank Children’s Hospital. Not because we didn’t trust our doctor, but so we could be where the specialists were, just in case. A few hours later, our decision was made for us. Madi started peeing blood. At that point, we all wanted to be sure. We talked to the doctor at midnight that night and he told us we would transfer first thing in the morning. He reassured us that her blood work that morning was fine so she didn’t have HUS yet, it was probably just a urinary tract infection from all of the diarrhea. No matter what, we were doing all we could for her, supportive treatment is the only thing you can do for both of these diseases. That made me feel a little better, but we were still going to transfer, just in case. Troy slept a little that night. I didn’t sleep at all. Our families were all there by 6 a.m. that morning to just sit and stare at her. She was very sick still, nothing changing. Drew was also still the same. The doctor asked us if we wanted to transfer Drew, but we figured that he’d be out in a day so we left him with his grandparents, and we went alone. By 10 o’clock, we were strapping her on the ambulance bed ready to head to Des Moines. She was thrilled at getting to go for a ride, even though she knew we were only going to another hospital. She had been asking to go home for three days now. We were worried about her diarrhea on the way, but she slept the whole hour and a half, she hadn’t had an accident in her pants yet; what a champ! They let me ride with her, I was so thankful. I couldn’t help but stare at her pale body, sleeping so peacefully. She looked so pretty, but not my perky girl, I was so scared.
Blank Children’s Hospital was a bright place and the staff seemed very organized and friendly. Madi seemed a little better that afternoon. She perked up some and even laughed once, that was so good to see. We were all in better spirits when we called our family to check on Drew; yes, everything was going to be OK. They came in to get Madi’s blood and take another chest x-ray; she hated that. As a matter of fact, she refused to get in her bed after that because she was afraid they would mess with her. So she spent the afternoon and night in the rocking chair or on the cold, hard floor. As the evening approached, my body started to feel weird. I could hardly move, I got the chills and I was burning up. Madi was back to her listless self and moved very little, watching movies and sleeping. I was lying in her bed, exhaustion taking over; I was so afraid I was getting the dirty bug now. How would I take care of her? Of Drew? Lord, please don’t let me get sick now.
Around 7 p.m., our phone rang. It was the doctor in Fort Dodge. He called to tell us that Drew had a positive E. coli test. I could feel my heart pounding in my head as I shivered uncontrollably. “Send him here.” What else could we do at that point? I was sick and absolutely terrified that this would never end. Right after our call, the doctors came in. I was still lying in Madi’s bed, unable to move, feeling lifeless and emotionless. They began to talk, my head was spinning. They told us that Madi had HUS. Her kidney and blood levels didn’t look very good, but all they could do was watch her and hope that her kidneys didn’t shut down. If they did, we would do dialysis but there was no cure or medicine to help her. Ninety percent of kids with HUS recover with no long-term effects. All we could see was the other ten percent, but when we asked about that percent, they wouldn’t even answer us. My God, I’m going to lose my baby, my buddy, my life! I couldn’t move or even respond to them at that point, my body had shut down.
The phone rang shortly after that. It was our parents telling us that they were on their way with Drew. Emotionless, I broke the news to them, devastating everyone. They came in to take Madi to insert a catheter in her bladder so they could monitor her urine output. I couldn’t move, Troy volunteered to go. She was so weak and lifeless when they came back she only laid in her rocker and slept more. I was still lying on the bed when our families began to arrive. They hardly recognized me, my limp body, my patchy face; we were all terrified.
I finally got enough energy to go visit Drew who was aways down the hall. As I walked in they were talking about some pink in his diaper. I turned right back around and ran, screaming down the hallway. I was so afraid that I was going to lose one, maybe both of my babies. My mom, brother, and some nurses followed me. I dropped to my knees and cried and screamed. I began to lose faith in life, in the Lord; what was I going to do? I finally calmed down and they took me in a room to rest. I did sleep for a couple of hours. As I returned to Madi’s room around 2 a.m., Madi was sleeping on the floor and Troy on her bed. His mom was in there with him. He jumped up to greet me and ask me how I could leave him. I felt so bad because I knew he too was terrified, but I had to, I just had to. I went in to take a shower and gain some more strength.
That morning we woke up to snow. Madi even asked to see it, she loved the snow. Her flu symptoms were slowing down but she was so pale and her lab results came back very bad. We all spent a lot of time that morning crying. We carefully watched her urine bag, which began to show very little urine. We were so hoping that her kidneys would come around on their own, but that wasn’t likely now. Troy was beginning to break down often along with everyone else. Madi would look at us and say, “I feel better”, which of course made us cry harder. It was just like her to want to please everyone. She was so sick, unable to even lift her head to play with her dollhouse. I kept reminding her of all of the things we had to do when we got home — ride her new bike, play hide-and-seek, go to the park. I couldn’t imagine life without her. Troy and I went to the chapel and cried and prayed that morning. She had brought us so much happiness, please don’t take her from us.
Saturday lasted forever. The kidney doctors finally showed up around 3 p.m. They informed us that it was likely that she would go into surgery the next day to get her dialysis catheter put in. Her kidneys were not going to turn around. We asked one doctor if she would be OK through the night because she was so very sick. “I hope so,” was his answer. Those words stung: he “hoped so”. I had never been so scared in my whole life.
Drew was still down the hall. Troy and I visited him briefly, wearing gowns and gloves, just to be sure we wouldn’t make one of them more sick. We would talk to him and cuddle him, but taking care of him was too much for us now, that had become our mothers’ job. Madi cried for us often and since she was so irritable, we didn’t make her wait. We were so afraid it could be our last day with her.
Troy and I had decided to take turns sleeping in another room that night so we could be rested for surgery. I went first and missed my 2 a.m. shift. I woke up at 4 a.m. and ran into Madi’s room. Troy greeted me by saying that I had missed my shift, but he was glad I slept, he knew I needed it. Madi had slept better, her flu symptoms were slowing way down. She slept a lot, too much. She moved from the rocker to the floor early that morning. I spent a lot of time curled up next to her, holding her and praying. The surgeon was in early that morning and said that she would be going down to surgery soon.
When she woke up that morning her eyes were almost swollen shut and her ears were draining all over her pillow. We cried every time we looked at her, so afraid for what today might bring. They finally came to get her around noon. I can’t even explain my feelings, my fear. We all walked down with her. She was so quiet and listless. I was clutching the teddy with the big cross around his neck and Madi had her Barney and Bop. She was so strong. Our whole family went down to watch her wheeled into surgery. She didn’t cry, only asked for a pillow. By now, all of our tears were gone and we knew that this was a necessary step to getting her better. Would it work? We hoped so. Troy and I went to the chapel to pray and then joined the rest of our family in the waiting room.
A couple of hours had passed when the surgeon finally came in and told us that the surgery had gone well. He was a very confident doctor and assured us that he thought she’d be OK. He said that her tissues were soaked, dripping from all of the fluid in her little body, and he was sure that the dialysis would be started right away. We were relieved, but still not sure what would happen next. A short while later, she was asking for Mommy and Daddy. We were so glad to just see her. She was very groggy, in and out. We followed her up to her new room in the intensive care. They needed some time in there with her to get her all hooked up so we waited in the hall with our families. A short time later we were able to see her again, tired and listless once again. It was so hard to see her hooked up to all of the tubes and machines. They explained how the machine would fill her up every two hours, the fluid would sit in her tummy, then drain. It seemed so scary, but once again, a necessary step to recovery.
She slept a lot at first, so we took turns visiting Drew. Troy was afraid to leave Madi’s side, so I tried to see Drew more. He was still having diarrhea and a bad cold but didn’t seem to be getting any worse. I think they kept him a little longer for our convenience, for that I’m so thankful. We needed to all be there together now.
We spent our three days in ICU watching the dialysis machine carefully, praying it wouldn’t clog and send her back into surgery. The second day it did clog. The dialysis nurses had tried everything and we were prepared to go back to surgery. The surgeon came and fixed it without going back in — thank goodness! It set her back though, she was off dialysis for five hours that day. They hooked her up to an old-time gravity machine. This one really made us nervous because it would fill her with too much liquid if hers didn’t drain all the way out. Now Troy and I really felt responsible, we were the ones in there all the time. We couldn’t chance the nurses being too busy to catch it. It was that Monday, February 14, that she got her first blood transfusion with another to follow on Tuesday. What a sight, to see that dark-red blood pumping into my little baby. Her hemoglobin was at 5 when it should have been 12, so needless to say it was necessary.
She still spent a lot of time sleeping and watching movies. We spent a lot of time looking at her and talking to her and praying. When she was awake she was usually very irritable and asking for something to drink. They would only let her have 4 oz. of liquid in 8 hours because of all of the fluid already in her body. She hadn’t been able to keep liquid in for so long and now that she wanted it, she couldn’t have it, it was heartbreaking. Her lips were terribly dry and her body still puffy. Troy wrote her a poem during one of the times he wouldn’t leave her. It amazed us all, but she was his everything — his Bear. They let Drew leave on Tuesday. He went with our parents to the Ronald McDonald House across the street. He was still very much the same but holding steady.
By the third day, they were ready to move us to the pediatric floor. A positive but scary step for all of us. The nurses down there would have to learn the dialysis machine each shift, what a pain. Troy and I quickly became experts and basically took care of it ourselves. Sometimes we would have to roll her to get it to drain or unkink the tube. She still hated to be messed with and often had a lot of pain with the drains and fills. Sometimes her drains would have blood in them, that always made us nervous, but they would reassure us that she was still OK.
Later that day Madi told us she had to go potty. Go potty! I yelled for everyone, we got her the chair and she went! Everyone celebrated, she was glad to make everyone so happy. The doctors wouldn’t let us get too excited, it didn’t mean anything YET. She continued to go over the next few days and her creatinine levels were creeping down. Her blood, however, was still being destroyed by the disease. On Thursday, February 17, she had her third blood transfusion. She was beginning to be awake more often and playing some in her bed. They were allowing her a little more to drink but she still wasn’t eating. They had her on total nutrition in her IV, since she hadn’t eaten in two weeks. By Sunday, seven days after her surgery, they began decreasing the dialysis to every four hours. She got to go for a wagon ride that day around the halls. That made all of us very happy! By Monday, February 21, they decreased it to every eight hours and by Tuesday they took her off completely. Another positive, but scary step for us. Our family all took turns going back and forth between the McDonald House and the hospital. Drew was getting better and became my daily escape. I would visit him whenever I could but still didn’t take care of him very much. We were still needed at the hospital each night, but we didn’t let him forget us. It hurt my heart each time I left; I missed him so much!
Wednesday was a great day. Madi was sitting up, laughing, eating, they were talking about having us out by the weekend. Her kidneys were OK, they assumed with no damage and she was holding down food.
Then we were struck with more bad luck. Thursday she started throwing up again with a high fever and stomach pains. I was terrified! I was so sick for her to have to go through this again. The doctors were worried about an infection in her body since she still had the catheter in her tummy and the central line in. They found out that it was a urinary tract infection and started her on antibiotics right away. That was good news: something treatable. A few days later, Troy, Drew, and his mom went home, but Troy came back almost every night. I felt so lonely when they left, knowing that I wouldn’t see Drew daily made me terribly sad.
Well, once again we were on the road to recovery. They took out her dialysis catheter and told us that her kidneys were fine. A miracle, she was my tough cookie. Only one more time did she go through more fever and diarrhea, which postponed our leaving another week. Even though she still had her central line in, they would often have to poke her to take her blood to be sure there wasn’t a blood infection. She hated that and it broke my heart to put her through anything else. They found out that this time she had an intestinal infection from one of the antibiotics. It was beginning to feel like it would never end. One day she couldn’t have food, the next they were wanting her to eat. Her poor little body couldn’t make up it’s mind. There were so many times that she would want to eat and drink so bad in this last week but her body just wouldn’t keep it in, it was so very sad! With this infection her white blood cells also began to plummet. They were ready to call in the blood doctors, but my little tough cookie turned things around on her own once again! They gave her more antibiotics. As this infection cleared up, things got better.
She finally got out of bed and played. She walked like a newborn colt at first and was extremely weak, but began to show signs of our old Madi. It was Thursday, March 2, when they told us she needed another blood transfusion, this would be her fourth one. Her body just wasn’t making enough red blood cells yet. We were all hoping that this would be the final one to jump start that blood again. She began to play in the hall, flirting with the nurses, capturing their hearts with her true beauty. We would go to the play room too, she loved that. My baby was getting better!
It was Monday, March 6, when the doctor came in and told us that her blood levels were climbing steadily and snuck in the magic question — “Are you ready to go home?” Wow, I was beginning to believe it would never happen. I was frozen, terrified at the thought of taking care of her by myself, but glad for her to be better. That night Troy came back and we went across the street to the Ronald McDonald House for a couple of days. Not only for my comfort, but she still had her central line in, and she couldn’t get it out until Wednesday.
I had dreamt of the day we would walk out those hospital doors and now we had. It felt so good. Madison was so excited to get into our car and go for that short little ride. She had been through hell. She had battled many things and won, she was Mommy’s tough cookie — she still calls herself that today.
It has been over a month since we’ve been home. Madi still has some emotional scars. She talks about the hospitals and doctors and tubes a lot. She also gets tummy aches now and then, which are probably normal but they scare both her and I. She had nightmares at first and had to sleep with us, but that’s OK now. And, of course, her physical scars on her abdomen and chest which will always be her badges of honor and bravery. I, on the other hand, still have plenty of nightmares and scars. I guess when a mother sees her child near death, they may never completely go away. We have all learned a lot and hope that with time, all will be healed — forever!
Copyright 2001 by author: Shawn (Madison’s mother)