When Your Worst Fears Are Realized

This post comes with a trigger warning. I am about to discuss when a child gets sick – every parent’s worst fear. I wish what I was writing was fiction, but it is our reality.

The fall after my daughter turned two, she developed a crazy high fever. I remember she was hot and flushed, and we weren’t sure why. We couldn’t figure out what it was, and doctors threw out guesses like a virus, fifth’s disease and strep throat. She had countless tests that week and two walk-in visits. Tylenol and Advil weren’t helping but we kept at it for a few days. We waited and monitored and prayed that the fever would break. A few days in, she developed a rash on her hands and feet. Since her fever was so high, we thought it might have been a fever rash. I have a very distinct memory of sitting by the bath, looking at her feet, and being completely bewildered by it. By Friday, 5 days in, things hadn’t changed so we went back to the walk-in. By that point, her eyes had started getting very red. The doctor took one look at her and told us he was sending us to the emergency room. He said that he suspected Kawasaki disease but it needed to be confirmed by the hospital. At that time we were familiar with the disease because Hubby’s nephew experienced it a few years earlier (and made a full recovery), but we were still awestruck and shaking.

The next week and a half were a whirlwind that I will never forget. We started at one hospital closer to our house, but quickly made the decision to drive downtown to Sick Kids Hospital. The drive down was a mix of panic and fear. I remember that it was dark outside and my first thought was that she was supposed to be in bed by then. When we go to the ER, she was almost immediately diagnosed with Kawasaki’s Disease – a very rare inflammation of the small blood vessels, characterized by a very high fever, and red palms, feet, tongue and eyes. The danger with the disease is that the vessels around the heart also become inflamed, which could lead to coronary failure, and if not treated immediately would be fatal. It must be treated in the first week to reduce these symptoms. Let me tell you – Dr. Google is NOT your friend in these times. While we were waiting to be admitted, we did our own research and read all about the countless children who were left untreated and died from coronary failure. This only fueled the anxiety and panic.

Early in the morning on day 6, she began the treatment. The typical treatment is an infusion of IVIG (intravenous immunoglobulin) to help her body fight the infection. The typical course of treatment is half a day of infusion, followed by 24 hours fever-free. Unfortunately, she developed an allergic reaction to the infusion with her fever spiking, so they had to stop it less than an hour in. The secondary course was a synthetic IVIG alternative that works the same way but requires more than double the time to administer. We waited, patiently while she received the dose and prayed. Once it was administered, the clock began for our 24 hours fever-free. All seemed to be going well, until the 20th hour when her fever spiked higher than ever, right smack in the middle of the night. I won’t go into specifics but I will tell you that was the worst night of my 38 years of life. The second round of synthetic IVIG was ordered, and her fever began going down. Then, thankfully, she passed the 24-hour mark without fever. Then she passed her cardiac function tests. After a week in hospital, she was released to go home with an Asprin regimen and two very nervous parents.

After her follow-up a year later, she was released from the hospital’s caseload and we finally felt like we could breathe again. We thank God every day that she does not have any lasting heart defects, as many children do. So many children die or suffer life-long issues as a result of this disease. We are forever grateful that neither of these is the case. Having a hospital like this in our backyard, especially one that has a dedicated Kawasaki’s clinic, was the greatest gift. I tell you all of this, so you can understand why Sick Kids Hospital means so much to me. So when I tell people that they saved her life, I am not being dramatic – it is the truth.

As a teacher, working with Heart and Stroke on their Jump Rope for Heart campaign is incredibly important to me (hence the picture from a couple of years ago pre-Covid). But more than that, I do whatever I can to help Sick Kids Hospital, and encourage my kids to do the same. Toys, money, or gifts for the nurses in the cardiac ward – any way we can show our appreciation even seven years later. Because, for me, those seven years still feel like yesterday. In a blink of an eye, we are back there, holding her hand, crying together, and praying.

This month I am participating in the Get Loud campaign for Sick Kids. They are looking to build a bigger hospital, to be able to help even more families. All September long, I am cycling, walking and lifting in honour of this campaign. If this post has struck a chord with you, I urge you to consider helping my campaign. Sick Kids Hospital is the ONLY organization I would ever ask for donations for.

And in the meantime, I will continue to be thankful for the gift that we have received – the gift of life for our family and J. I pray that others in our situation have the same outcome. Hug your babies, everyone.

This is life. Love, Mom.

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