Kawasaki Disease…

It was late at night, on a Sunday. Under the urging of family members, we decided to bring little milo to the 24 hour clinic in Mount Alvernia, as he had been having high fever (ups and downs) since Wednesday. I am so glad that we heed their advice at that point. There wasn’t any unusual symptoms, he was still active other than the fever but I was worried as his neck couldn’t move at all (which his PD mentioned could be due to a very bad sore throat) and he wasn’t taking in a lot of food. We waited for an hour or so before we saw the doctor and had little milo admitted. 3 days, that was the estimated number of days, at max, that we will need to stay, at least, that’s what we thought.

So there we go, with his PD coming down at midnight, and suggested to increase the dosage for antibiotics, and at the same time, do some blood test to see what could be the issue. This, was the beginning…

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They brought him to the treatment room, and inserted the IV plug. He was brave, really brave, never cried at all. And then they took some of his blood, and brought him back to the room where he was put on drip. He didn’t resisted as the fever had kicked in, so he took the Paracetamol and went to sleep. Good, the higher dosage of antibiotics should work, I thought. I woke up every other hour after that, whenever he cried for milk, the nurse came in to measure the temperature or fed him the medicine. Then the lil’ hub left for work to settle some issues before coming back.

It was only less than 6 hours where I was left alone with little milo but it felt like years. He woke up and got really frustrated, demanding to go home, and kept on crying. Wanted me to carry him so I had no choice but to do that while moving the drip and stand along. That was the only way of comforting him. Even his favourite iPad was rejected. I know, by then, he must be feeling really horrible, and so did I. The doctor came with more bad news. The blood test showed an extremely high level of bacteria (where did that come from??!!), which was definitely not normal (usual around 13 [I only managed to see the numbers but don’t understand it], while his was more than 100). He started to eliminate those possible causes and then he looked at me and asked, “Have you heard of Kawasaki Disease…” …and my thoughts started to trail off while the doctor started to look for the symptoms. I’ve heard and read that somewhere before, and I don’t remember it being a good thing…

The next few hours passed quickly as I recalled what the PD said. 5 symptoms to look out for:

  • Red eyes – No
  • Swollen lips & strawberry tongue – Yes
  • Rashes in feet and hands – Yes
  • Lymph node at neck more than 1.5cm – His at 1cm
  • Peeling of the skin (occur only at later stage)

And then I started to search for all the information that I could get. Nothing. Unknown cause on how the disease was caught. Only managed to find a thesis that mentioned about the correlation between delayed allergies of pollens, and a parent whose kid caught this disease after going to Garden by the Bay. We did too. Is it because of the pollens of the flowers? Whatever it is, it is not a disease to be ignore for there is a window period of 7 days. Anything after that might lead to the dilation of the arteries connected to the heart. Possibility of thickening of blood too which might cause clots. So look out for high fever and the symptoms.

While doing that, he was brought in to another room for a heart scan. Thank God, everything looked normal. Doctor said the window is good and I should just go for the treatment before it’s too late. And after discussing with the lil’ hub, we decided to just go ahead.

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It didn’t take them very long, to do the paper work and move him to the ICU to begin the treatment, so that he can be monitored around the clock in case there are any allergies. ICU, it’s the first time I’m in it, and it sure is not a good feeling, especially when lines of tubes and cables were all around. I couldn’t sleep that night, especially after they began the treatment (dripping 3 big bottles of antibodies, extracted and filtered from the blood of a thousand donors), and I went home to bathe and had a shock when the lil’ hub said that little milo kept trembling, the fever spiked and the doctor had no idea why. Treatment was stopped till an hour later. I was back by the time he stopped crying and the treatment restarted.

Longest night ever with no proper place to sleep, and a central aircon that was freaking cold. By the time the sun finally came up, I sneaked out to the car to grab the hp’s cable and had a quick nap in the warmth of the car. But within minutes, the lil’ hub called and asked me where I was for little milo’s fever came back and he’s crying for me. I, almost broke down. Is the treatment working? He was alright for the whole night I was there. What happened? That was the last time I left his side for slightly longer during that whole period.

I took a deep breath before I ran back with my fingers crossed, and forced positive thoughts in my head. Then the hours after that felt like I was monitoring a stock market… with the fever still going up and down, and a possibility of a second dose if things didn’t improve.

Luckily, the fever stopped coming back 9 hours after the treatment, as I kept my fingers crossed all the while for another 48 hours till he got discharged and had his energy and appetite back.

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Looking back, I am so thankful we did not ignore the advice and decide against sending him to the hospital. Thankful that we did not wait for more symptoms to come out before going for the treatment. The 5D5N at Mount A was horrible but am also very thankful for all the support from family and friends.

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Two weeks has passed and today, I am back in the hospital with little milo for his follow-up heart scan, to check and ensure that things are fine. Worried? Yes, because I’ve read and heard stories but I remained positive. Again, I am so happy beyond words when the doctor said that things look normal although he will have to come and do a scan on a yearly basis for not sure how long more.

A lot of times, I forgotten how vulnerable life can be. I take it for granted. Taking up a course cannot be used as an excuse to spend lesser time with the children. Working hard to earn more money sometimes cannot be too. I need to learn how to manage my time better… we all probably need to…

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…he is fine now…

…very thankful…

*breathe*

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