Join me on my journey through my nine-month-old son’s battle with Kawasaki disease. I share the intense emotional and physical challenges we faced, the misdiagnoses, and the eventual life-changing diagnosis that reshaped our lives.
Please see more information on Kawasaki Disease HERE
Preparing for Treatment
They had planned to start his treatment in the evening, as they needed to prepare him and everything else beforehand. Once again, I had to pin him down so they could place another cannula. I wanted to scream at the doctors for making me do this, even though I knew it was necessary. I waited anxiously for a doctor to visit, hoping to understand how safe this treatment was and if, by any chance, he didn’t have Kawasaki Disease, whether it would harm his health. The doctor reassured me that this was the best decision for him and that we needed to start as soon as possible.
Treatment Begins
That evening, they attached a machine to his cannula and began pumping antibodies into his system. At first, everything seemed fine, but as the minutes passed, my son’s fever spiked again, and he trembled all over from the sudden temperature change. We were petrified, thinking it was the treatment causing this reaction. The nurse stayed with us, reassuring us that this is common when experiencing a fever. She gave him paracetamol and returned frequently to check on us and reconnect the machine (babies have very small veins, and cannulas are not very reliable). The constant beeping from the machine quickly made us feel anxious and on high alert. At this point, I hadn’t slept properly in two weeks, and my mind and body were shutting down. I couldn’t comfort my son as he cried and became distressed. Feeling overwhelmed, I handed him to his dad and said, “I can’t do this!”
Emotional Breakdown
I went to the seating area on the other side of the room and cried silently, shaking and curling up in a ball, trying to release the overwhelming sadness and exhaustion. The nurse came in and quickly offered as much support and comfort as she could, even though all I wanted was to return home to the life I once knew with my baby. After my outburst, I went back over to my son and held him closer, doing whatever I could to get him down to sleep. A strength had come over me, and again I was back giving him all the love, patience, and comfort he needed. The treatment continued through the night with the machine beeping constantly and the nurse returning to fix it. I held my son all night and drifted into an unexpected sleep, waking up frequently to make sure he was okay and resting.
Continued Monitoring
We were woken up in the early hours of the morning to a nurse unplugging the treatment and letting us know that it was finished for now. They checked my son’s observations and proceeded to explain the plan for the day. I was told it was just routine and nothing to worry about, but my son would have an ECG and an Echocardiogram for his heart. At this point, I didn’t think much of it. You know when you go to the doctor, they do a bunch of tests to make sure everything is okay and it always is. That was my thinking…
Testing
The ECG was done quickly. The most challenging part was trying to place the stickers on my son without him pulling them off. The Echocardiogram was a little different though. A lady walked in with a big machine, which had a monitor on wheels, and asked me to lay next to my son to help keep him as still as possible. She placed a cold jelly on his chest and proceeded to assess his heart and take photos for the cardiologist to review. My son wasn’t happy at all, but the nurse was very patient and understanding, stopping and starting as much as needed. The process ran for around 30 minutes, and during this time I asked if everything seemed okay. She said she needed to go away and take measurements to know, but everything looked okay. Instant relief came over me, just by her using those three simple words. Once it had finished, there was a lightness in the room. We played with some toys, and I gave my son food to eat. He seemed a little chirpier too.
Waiting for Results
We were told that the doctor would visit us later to give us an overview of how everything went and the results back from all the tests done.
Your comments and feedback are invaluable to me. Whether you’ve experienced something similar or know someone who has, please feel free to share your thoughts below. Your support means the world to us as we navigate this challenging journey with Kawasaki Disease. Together, we can raise awareness and offer comfort to others facing similar struggles. Thank you for being a part of our story.
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