April 2015 (Part #3)

What is the one lesson that I've learnt?

Get that insurance early. When it's too late, it's too late.

TheBoy was born with one of the ducts in his heart not closing in a timely fashion. In layman's terms, that's a hole in the heart. In December last year, he had a heart scan which showed that everything was a-okay. We should have seen our insurance agent at that moment but we procrastinated. As always.

In January, he was supposed to have his vaccination. Don't ask me which one. As a bimbo mother, I bring him to all his vaccinations diligently but for the life of me, I can't recall if it's this or that or another one of those things. He had a cough then so I was advised to postpone it to the following month. In February, he was supposed to have another jab so both jabs were given on the same day, 13th February.

That night, he developed a high fever of 38.4°C.

Nope. I did not think that was abnormal. He had a jab. He's never had a reaction to any of his jabs before. But hey, he had 2 jabs today. So, a fever is normal. (Note: Low-grade fever is expected after a vaccination. Not anything above 38°C.)

The fever somewhat subsided over the next 3 days. He still felt warm but when I took his temperature, it was always 37-point-something.

Tuesday morning. 17th Feb. Hmmm... Shouldn't this post-vaccination fever go away already? Googled. Googled. Googled. What? Post-vac fever should not last more than a day? Should be sub-38°C? Oh God. Let's take his temperature. What? 38-point-something?! Oh no! To the polyclinic we go! Pronto!

TheBoy didn't show any other signs of illnesses other than a fever. He was sponged by the nurses. His temperature dropped a little bit and after a thorough check by the doctor, we were sent home with instructions to have a blood test if the fever persists.

It was the CNY week. His fever was raging. It came down with Panadol, but after 4 hours, the fever shoots up to above 39°C. It not only persisted, this nasty fever, it also went up and up. For a child who had not even started on his weaning diet, his first foods were a cocktail of chemicals.

Thursday. First day of CNY. He had been inconsolable for many days. He barely slept. His stubborn fever was evil. We decided to take him to KKH for a blood test. Blood and urine tests turned out normal. Just a nasty viral fever, said the doctor. Go home.

Friday. Rashes started appearing on his hands and feet. Not HFMD. Not chicken pox. Googled googled googled. Maybe it's roseola. But roseola appears when the fever has subsided. This fever was still going on strong. But maybe, it's roseola and maybe, the fever is subsiding, we comfort our worried hearts.

Satuday evening, rashes which seemed to look better in the afternoon worsened at night. His lips were cracked and bleeding. He has cried himself hoarse and he's barely drinking any milk.

Sunday morning. He was too tired. He had been crying throughout this ordeal. We were exhausted. We could not comfort him much. It was time for another trip to KKH.

"It might be Kawasaki Disease," the doctor said.

Disease, why disease? The word 'disease' sounded like a long-term problem. My heart constricted a little bit and the doctor explained.

"Flat rashes, red lips, red tongue - looks like symptoms of Kawasaki Disease. But for patients with KD, there is a possibility that they might get heart disease as a result of this episode."

Heart disease.

I lost control of the floodgates. The tears gushed. The knowledgeable doctor said that as long as treatment is given within 10 days, most KD patients would not have any heart problems. I started counting. Counting his vaccination day as Day 1, that day was Day 10. But later on, another doctor said that they started counting from Tuesday as the 3 days when his fever was sub-38°C was not considered .

He was hospitalised and initially for my own comfort, we opted for a private ward class. The next day, a doctor spoke to me and asked if he was insured. No, I said. She strongly advised me to downgrade. At that moment, they could not start the treatment for him as there was no single test to confirm that TheBoy had KD. What they had to do was to confirm that he was not having anything else and all signs must point to KD. It would take time. "If it's not KD, what else could it be?" I asked. She listed a list of conditions which I didn't want to hear of either. Brain infection, sepsis of the blood. My mind - which was beyond exhaustion as a result of handling a sick, crying baby who cried through the night, giving me a total of 2 hours of sleep each day for more than a week - went blank after that. Downgrading is always a tricky issue at hospitals but I had to try. I went to the business office, pleaded my case and was given a downgrade to B2. Alhamdulillah.

But, Allah is kind and most merciful. B2 does not have a bed for us so we could stay in the comfort of the private ward class for another day and night.

I had witnessed so many days of inconsolable crying that on the first night at KKH, I started crying along with him. As I tried and failed to comfort him despite my best efforts, crying along was cathartic somehow. Had I been in B2 (6 patients in a ward, beds close together), I would have made many, many enemies as both son and mom wailed through the night.

Late Monday morning, the doctors confirmed that it was KD.

The treatment, Immunoglobulin harvested from many many many plasma donors, would be given intravenously. The doctor assured me that once the Intravenous Immunoglobulin (IVIG) has been administered, the fever would crash and he would be a lot less cranky.

Finally, at 12 noon, the treatment was started. By 2pm, his fever finally went down on its own. For the first time in what felt like forever, he slept for 2 whole hours, uninterrupted.

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But the worst was not over.

We had to scan his heart. The appointment to do so was for a week after discharge. For some reasons, I always think I'm strong and can do these things alone. So, TheHusband didn't take time off from work because we are optimistic that results would be good. (Sometimes, I really don't know where I get this big bucket of optimism from. It could be insanity masked as optimism.)

TheBoy's name was called and in we went. A sweet technician with a lovely singing voice started scanning TheBoy's heart. She sang to the boy. I heard her murmuring to her partner, dilated. She continued singing to the boy. Could I have heard wrongly? Yeah, I'm sure I did.

The head of the paediatric heart department came in. Hmm. Why not just a regular doctor, like during his December scan? He scanned TheBoy again and I could hear the words I didn't want to hear.

His right coronary artery is dilated. And there is an aneurysm in his left coronary artery.

Allah. Allah. Allah. Give me strength, Allah.

He explained with diagrams what he meant. The good thing is, the aneurysm is small and it just requires regular monitoring.  The worst thing that can possibly happen is a sudden heart attack. He has to learn how to manage stress and live a healthy lifestyle.

I nodded at appropriate pauses and tried to keep those tears out. I remember going to the counter to arrange for my next appointment. Then, I walked in a daze and only realised that I was at the taxi stand when I almost knocked into a display panel. I told the taxi driver where I wanted to go. And miraculously (because Allah is kind and merciful and so He sends me good friends and a great family), 3 of my friends asked me separately how Ihsan was when I was in the taxi. The tears that I had stoically kept within myself flowed.  The enormity of the situation was too much to bear and on these friends,  I unburdened my sorrow.  (Thank you.)


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A week passed.  And I felt better.  I saw the silver lining behind this dark cloud. So many people unknowingly live with their aneurysms. At least for us,  we know he has one and we can get it monitored at regular intervals. We can take precautions and with Allah's mercy,  Ihsan will live a long, healthy life.  Amin.