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
The next day, my son’s procedure was swiftly scheduled due to the severity of his condition and his young age. The surgeon arrived to discuss the necessary consent forms and explain the risks associated with the local anesthesia. Overwhelmed with emotion, I asked desperately, “Will he be okay?” Tears streamed down my face as she quickly reassured me that the procedure was routine and that she had performed it many times before. With the patience of a fellow mother, she comforted me, assuring me he was in capable hands.

After signing the paperwork, I returned to my son’s side. He was visibly anxious and refused to let me leave him even for a moment. As the procedure time neared, doctors and nurses prepared us, explaining the process and how the anesthesia would be administered. Despite their assurances, it was far from simple. He resisted the mask, and it took all my strength to calm him as he slowly drifted off. Watching him go limp in my arms was heart-wrenching. I felt distraught and couldn’t stop crying. I felt broken as everything seemed to come rushing in—all the emotions I had been burying while trying to keep my head above water.
Recovery and Move to HDU
During the procedure, I sat by his bedside, vacant and feeling utterly shattered. Hours passed before we received news that he was in recovery. Anxiously awaiting the chance to hold him again, I longed to comfort him after such a traumatic experience. When I finally heard his cries down the corridor, I rushed to his side. He was red-faced and frightened, but as soon as I held him close, he found solace in my embrace. We handed him his bottle of milk, and I lay beside him, grateful that he was back with us. The doctors informed us that the procedure had been successful, but we needed to pack our things as our son would be moved to the High Dependency Unit (HDU). They explained that he would need constant monitoring and supervision during the treatment.

High Dependency Unit Experience
The HDU was a scary place, filled with sick children suffering from various conditions. The environment was indescribable, filled with sadness but also a glimmer of hope. It was nearing Christmas, and the ward had been decorated with tinsel and fake snow on the windows, which, despite trying to improve the atmosphere, only made the reality sadder. He lay on the bed attached to numerous wires and monitors. The heaviness on our hearts during this time was immense. Both his father and I were allowed to stay the night due to the severity of the circumstances. We didn’t sleep but watched him the whole time. I remember going to the bathroom around 4 am, completely exhausted and empty. I fell to the floor, crying with a gut-wrenching ache that consumed my body. This was hell, and we were living in it. He was in HDU for around three days. Once they felt he was stable enough, they moved us back to the original ward, where we spent the rest of our admission.
Post-Hospital Transition
The days started to blend together, and I was still trying to wrap my head around all the medications he was taking and what each one did. They organised a CPR class in case of any emergencies; they strongly advised us to attend. As I write this, we are over a year into the diagnosis and, thankfully, have never had to use this training, but I regularly review the content to keep it fresh in my mind. After a few days, we were visited by a Haematology team and a Kawasaki Disease specialist team. Each one discussed what would happen once we returned home and how they would be on hand to support us. We were told that in order to be discharged, we needed to know how to test his INR at home and administer injections for Deltaparin if his INR dropped out of range.

Home Care Routine
Currently, I have two WhatsApp groups set up: one for his Haematology team to review his Warfarin (blood thinner) dosage and regularly update his INR (International Normalised Ratio), which tells us how long it takes for his blood to clot. His therapeutic range, advised by the cardiologist, is between 2-3. After two weeks in the hospital, we were discharged. He was on high doses of steroids and aspirin, along with something to protect his stomach. I was also administering his Warfarin, while his dad injected him in the thigh twice a day as I couldn’t physically bring myself to do it. I checked his INR daily until we reached the correct range.
Returning home after such a harrowing experience in the hospital was daunting. We all struggled with adjusting to our new normal. The trauma of those days lingered, and we found ourselves living with PTSD, constantly haunted by the fear of what might happen next. Despite this, our primary focus remains on giving our son the happiest and most fulfilling life possible. We strive to fill his days with joy and surround him with love, cherishing every moment we have together.

This blog series is written not only to share our journey but also to offer comfort to others facing similar challenges. I hope to create a supportive space where families can find solace and strength, knowing they are not alone in their struggles. As we continue on this journey, there will be more stories to come, documenting the triumphs and setbacks we encounter, and sharing the unwavering hope that guides us every step of the way. Together, we can navigate these difficulties and find light in the darkest of times.
Your comments and feedback are invaluable to me. Whether you’ve experienced something similar or know anyone 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.