Photo by: Lars Plougmann

To Hell and Finding Our Way Back

Photo by: Lars Plougmann

I recently found myself forced to consider my three-year-old son’s mortality. He and I were alone in a dark hospital room, and in these moments, I stared at him, stroked his hair, held his little hand inside mine and cried. I thought of the day he was born, and of how the nurses encouraged me to keep him in the nursery overnight while I slept, but I insisted he sleep in my bed. Of how on his first birthday, he painted himself head to toe with cake. Of how he says, “Oh, that’s a true classic,” whenever we read “Oh, The Places You’ll Go”. Of all the spots he’s ticklish and his infectious laugh, of how he can never keep from giggling and fidgeting when we’re trying to hide and jump out to scare Pa.

A few days after Christmas, Enlai complained of stomach cramps and came down with diarrhea. I thought it might have something to do with all the sweets he was allowed to eat at various Christmas celebrations; perhaps all that chocolate was too rich for him. But when the diarrhea didn’t stop after a few days and then became bloody, I called our GP’s out of hours service, and the doctor told me to call an ambulance. While at the A&E, one of the doctors said that while his symptoms matched those of one stricken by E.coli, Enlai’s appearance didn’t look as though he had E.coli. “I’ve seen patients with E.coli, and they do not look as healthy as he does,” she said.

Some hours later, she asked if we’d ever heard of Haemolytic Uremic Syndrome (HUS). I never had and immediately looked it up. I started reading aloud to my husband what I found, and he asked me to stop. He said that doctors often mention possibilities that match the symptoms of the patient, things they are investigating, but that does not mean these things are the diagnoses. We were released from the hospital that evening, and the doctors said that they would call us when they received the results from the stool samples, which would likely be in several days as it takes time to grow the bacteria.

While at home that evening, things became progressively worse. I called the GP first thing in the morning, and we were fortunate to get an appointment. After examining him, she sent us straight back to the A&E. At this stage, Enlai had to use the toilet every 15 minutes, and what was in the toilet was primarily blood. He was admitted into the hospital, given a fluid replacement and electrolyte IV drip, and continued to be monitored. The doctors finally informed us that his stool samples showed that he had E.coli 0157, as well as the Rota virus.

When we arrived back at home, I contacted his school to tell them and to make sure that there weren’t other little ones who might be infected. I contacted his gymnastics class and all our friends. Everyone seemed to be fine, for which I was so grateful. Because the E. coli O157 infection is nationally reportable in the UK (and the USA), the Health Protection Agency contacted us and the Westminster Environmental Health Office visited us, informing us of steps we should take to safeguard ourselves and others. They also asked us a variety of questions so they might determine the source of the viruses. To date, they have not determined the source, and it is unlikely they will as Enlai’s was a solitary case.

Although I read that most people recover from E.coli 0157 without antibiotics or other specific treatment in 5–10 days, Enlai was not so lucky. About seven hours after being home, the doctor called us to tell us to come back to the hospital. Enlai’s blood test results showed that he now had HUS, and the hospital wanted to admit him, this time to the hematology and infectious diseases ward.

As to be expected with any parent in this situation, I was not okay. I started packing the bag I had only unpacked a few hours earlier while simultaneously trying to explain to Enlai what was happening. I know there is only so much his young mind can comprehend, but I have always made an effort to be honest with my little guy and explain things in a way I think he might understand. I told him that the doctors were determined to defeat the “baddies” in his belly, and in order to do so, we needed to go back to hospital. Understandably, he said, “I really, really, really don’t want to go back to the ‘hostipal’, ma.” And as strong as I tried to be at that moment, I couldn’t hold back tears. While telling him how lucky we were that we’d have a chance to have a movie marathon in the hospital and watch all the Shrek and Toy Story we wanted, and sleep on a bed that was much cooler than ours because it had buttons that controlled it, and have our own little slumber party where we could stay up past our bedtime if we wanted, I was thinking about what I’d read about HUS.

HUS is characterized by anemia due to the abnormal breakdown of red blood cells, acute renal failure and a low platelet count. It’s considered a life-threatening condition, and blood transfusions and kidney dialysis are often required, with prolonged hospitalization and long-term follow-up. HUS carries a 5-10% mortality rate.

Within two hours of being admitted, we were told that Enlai would need a blood transfusion. Doctors apologized that it seemed counter-intuitive to take so much blood in order to give blood, but we understood. By this time, my little prince was used to the gel the doctors and nurses apply as a numbing agent before drawing blood. But of course being accustomed to something doesn’t equate to liking it or allowing it to happen without a fight. I was pleased to see him expressing himself as opposed to being listless.

While waiting for the transfusion, the nurse would come in every hour to check Enlai’s vitals – blood pressure, pulse and temperature. These came to be known to us, respectively, as “the Velcro arm band squeezy”, “the glowing finger thing”, and “the stick in the armpit”. During one of the checks – which my little prince was obviously finding annoying at this stage – he said, “Tell the nurse I’m gonna throw her in the garbage bin.” I did tell him that it was not a nice thing to say to anyone, but at the same time I thought to myself that if I were in his shoes, I’d probably be thinking something similar.

In all of this, the early morning hours before the transfusion were the scariest for me. Enlai developed a fever, and he started to shiver. I noticed his head shaking abnormally, and what ran through my mind was that in a third of those diagnosed with HUS, neurologic symptoms including seizures or altered mental status occur. It was the one and only time I used the nurse call button. When she came in and observed Enlai, she said that this was common with fever and not to worry. She also said that the doctors wanted to wait until Enlai’s fever dropped to administer the transfusion.

I was haunted by “what if” scenarios. I remember years ago my brother telling me about an imagery exercise he learned which involved seeing the situation, imagining yourself coping in the situation and mastering the situation. I have no idea why I thought of it then, but I did. As the transfusion complications and mortality percentages haunted me, I concentrated on imagining us leaving the hospital and singing songs on the way home. I thought of us stepping into our flat, flopping on the sofa and shouting out “Hip, Hip, Hurrrrrrrrrraaaaayyyy!!!” The exercise helped me remain optimistic, but I was still being held captive to fear. I phoned my husband – who I had told earlier to go home to try to get some sleep – and asked him to come back to the hospital. I phoned my parents. And I prayed.

A doctor came in to ask if my husband and I were aware that dialysis may be the next step. I told her that we realised this and that if this is what she and the other doctors were recommending, of course we trusted them. The nurse entered to administer the transfusion, and luckily, Enlai was asleep.

For the stranger who donated his or her blood, our gratitude will never be enough.

When Enlai woke up three hours later, some of his color was back. After not having peed for two days, he said he had to pee. To demonstrate the significance of this pee, here is a transcript of an email my husband sent to family to give them Enlai’s status:

It’s been a long night at the hospital. Enlai’s now three hours into his blood transfusion and things seem to be going well. A major concern was that Enlai was building up a lot of fluid but wasn’t passing any urine. The wee mahn woke up half an hour ago and took the biggest pee I’ve ever seen in my life. The nurse was thrilled and said the doctor would be thrilled too…

We eagerly awaited the doctor’s arrival so she could give us the most recent results of the urine and blood tests. She said that while there was some progress, he would need to stay in the hospital for at least another week as his kidneys were not functioning properly yet, and he may need another transfusion.

So stay we did, and the next day grandma arrived. The grandma prescription was Enlai’s favorite medicine. There were other remedies he liked, including a variety of cards, gifts, balloons and food from friends. Every day, he showed progress. We had to limit his fluid intake to 200ml/day, and he often said he was thirsty and would cry and tell us all he was going to throw us out the window because we were only allowed to give him sips of water or juice. I told him that if he threw me out the window, I’d surely be rescued by Batman, who would then show me his Batmobile and Batcave. He smiled.

In the evenings, lying down next to Enlai sleeping, I thought of the countless parents who have devoted their lives to caring for their ill or terminally ill children. I thought of the complete strangers who were pulling for Enlai. I thought of the weight of strength and optimism. And, I thought of the enormity of my love for this little guy.

After a week, Enlai made so much progress that he was allowed to leave the hospital. After our first outpatient visit for a blood test, urine sample and to have the cannula removed, the doctor called with great news. My little guy’s kidneys seemed to be functioning at 100 percent, and it looked as though he wouldn’t need a second transfusion. I thought to shout the fantastic news to everyone on Oxford Street, but I was crying so much I couldn’t muster a shout.

Of course, Enlai will need long term follow up to make sure he does not show any signs of developing kidney problems in the future. But right now, he is happy to be home. We are so incredibly fortunate for our friends and family. Our friends have brought over home-cooked meals, groceries, flowers, cards, toys, books, flowers, and comfort. Comfort in knowing that if we needed absolutely anything, they wouldn’t hesitate to be at our door.

To the young boy who I saw in the hall at the hospital with his IV stand, very little hair and the saddest eyes I have ever seen, you have my heart, and you will remain with me always. I hope you are home now as we are.

Lisha Aquino Rooney is mama to three-year-old son Enlai, and Oomphalos is a blog which addresses nurturing the connection between babies and toddlers and their parents and carers. Awash with humorous firsthand insights, the blog discusses such topics as breastfeeding, teething, baby accoutrement, weaning, tantrums, and everything else related to the bond between wee ones and their grown-ups.

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