Follow Up Appointment #1

Went back to KKH for his first follow-up appointment since his discharge. Unfortunately he started having a fever in the morning. I took his temp and it was 37.7. When we reached the hospital his temperature was 37.9.

Anyway went to take blood and had a urine bag attached to him coz they wanted a urine test done too. My appointment was supposed to be at 9.10am, but because of the blood test results I only saw the doctor around 12pm. M was especially cranky that day but thankfully when he went in to see the doctor he was relatively calm (except when they made him lie down on the bed to check him).

Anyway the Rheumatologist (Kawasaki Disease Doctor) was very pleased with his blood test results. His inflammation markers were normal (means no more inflammation in him I suppose) and his haemoglobin levels were up to normal. The doctor used the word "excellent" to describe his blood test results.

She did ask though, whether his fingers have started peeling and I replied no. Frankly I'm not even 100% sure that he had kawasaki disease. So I asked whether the aspirin he's taking right now is harmful for him (in the event he really does not have KD), but she said because his heart vessels were dilated, the aspirin for now would do him good. And the dosage he's taking isn't that big anyways.

So that's that. Another KD follow-up appointment after his 2D echocardiogram in February 2017. Hopefully by then everything would be A-OK too.

Next follow-up appointment is next week, to meet with the Infectious Diseases Senior Consultant, for his adenovirus. Fingers crossed too everything's gonna be fine!

Discharged on 18/11/2016

Thankfully after the 2nd dose of IVIG, the fever subsided and stayed away. M continued to grow stronger and stronger. They took his blood on 17/11/2016 to test for adenovirus count, his inflammation markers and other stuff. His inflammation marker went down and his adenovirus count also decreased significantly. They saw that his red blood cells were decreasing though, so recommended a blood transfusion to boost his RBCs. End up on 17/11/2016 night he was given a blood transfusion.

On 18/11/2016 (Friday), the doctors came by to look at him and were very happy to see him almost back to his normal self. Alert, with good appetite, active. So they said we could go home that day. And we did!

Today is 23/11/2016, 5 days after his discharge from the hospital and thankfully the worst truly seems to be over.

However, every morning and every night, when I see him lying next to me on the bed, sleeping peacefully, I whisper "Thank you Lord." for now I really appreciate the fact that he is beside me, safe and sound. I have begun to pray more for him and with him. In time to come I hope to bring him to church and introduce him to God and His Word. It seems only right that I should introduce him to the person who saved him and kept him well-protected.

It was a very scary experience that I would not wish any parent to go through. I've bought hospitalisation plan for him, albeit it's a little too late for this episode but still, buying it now is better than not buying at all. Can't stress the importance of it to all my friends!

Second dose of IVIG

On 14/11/2016 (Monday), the doctors decided they would give him a second dose of IVIG. It was administered at night and treatment was completed at 3.45am on Tuesday morning.

The whole of Tuesday (15/11), he did not have any fever. So if by today (16/11) 3.45pm (36 hours after IVIG), and his fever does not return. Then his kawasaki disease is likely to be fully gone.

However, his adenovirus count is still high. It dropped from 5 to 4, based on the blood taken on 14/11. But a fully recovered person should have 0 in their blood. We are really reluctant to give him another dose of cidofovir, given its potential damages to his kidneys. We shall see what the doctors advise later.

Clinically, M is getting stronger, eating and playing more, sleeping less and is responsive to our questions. He would smile and laugh and babble some funny stuff. It makes us so so happy to see him slowly recover. He is no longer on drip nor on Ventolin puffs.

On 14/11, the doctors came by, listened to him and told us that he had an "extra heart sound", a gallop. We were devastated. It seemed like it never rains but it pours. He was sent for a 2D echo of his heart. Thankfully the doctor who saw him said it didn't seem to be anything serious. On 15/11, the doctors came by again, and they confirmed the extra heart sound is gone. One of them was relatively amazed and said to me,"I can't explain it."
I can. This is the power of God. For He is our Healer. Thank you Lord.

Day 11 of fever

Yesterday after I posted, I asked my friends to pray for M. Miraculously, in the afternoon, his fever declined, he even sat up and played and SMILED, for the first time in so many days. He had a little of his appetite back too. We were ecstatic. We thought and hope the worst is over.

Today his fever came back a little. It's 38.3 now and I'm waiting for the doctor to come and assess him. He also seems very tired and lethargic and has trouble breathing. Everytime he stirs in his sleep and the oxygen mask is too far from his face, his oxygen level would drop to 89 (should be able to maintain 95 on his own).
He hasn't eaten or drank anything since 6plus last evening. Though he is on drip but the missing appetite worries me again.

I shall update further after the doc comes. Whatever it is, thank you God for lowering his temperature. Thank you thank you thank you.

Update on 14/11/2016 1.51am:

All through Sunday night M did so well. His fever totally subsided, he was awake for hours, he played and ate. The hubs and I were doing somersaults and feeling veey upbeat and positive. We thought the doctor would come in the morning and clear him and allow him to be discharged on Tuesday.

Just a few minutes ago his fever came back up again, to 38.8. His heart rate is also really super fast now, about 160-170+, compared to the ideal one of 120-130, which he managed to achieve earlier in the evening.

I'm not a doctor, so I can't say why his fever is back but it does not bode well. He's also coughing a lot more again even though throughout Sunday he didn't cough much at all. We'll just have to wait and see how he progresses through tonight ans hope for the best, then wait for the doctors to assess him tomorrow morning.

I wanted to whatsapp the hubs but I decided not to. Why make him as heartsick as I am? I shall just keep praying for a miracle to happen.

Day 10 of fever

Yesterday they gave M the antiviral drug, cidofovir. However, his fever did not go down today and he still hasn't improved.

Later, the rheumatologist is coming to assess him to see if he needs another dose of IVIG for the Kawasaki Disease.

We keep expecting to see improvements in him and his fever, but we keep bumping into walls and nothing seems to be working.

I am at a loss. Don't know what to think, don't know what to say. It seems as though he's slipping through our fingers but that's just the pessimist in me speaking. I am so scared. Scared beyond words. I keep thinking the worst although I know I'm supposed to stay positive. I just pray the Lord will be merciful to my firstborn, my one and only, and heal him.

To the Lord, it is as simple as lifting his littlest finger but to me it means the world.

Please God. Please.

Our journey with Kawasaki Disease and Adenovirus

It started off simple enough, M had a cough and runny nose. The cough was not significant so I didn't think too much of it. Over the week it got worse. Finally on 31 Oct (Monday), the hubs suggested we bring him to the PD. Doc said no wheezing in his lungs so we were sent home with zyrtec and terbutaline.

On Thursday, M's childcare called me to tell me he was running a fever of 37.9 degrees. Brought him home and over the next few days, his fever went up and down. Going as high as 39.4 and as low as 37.6.

On Sunday, having seen his fever continue to spike over 39, we decided to bring him to KKH A&E to do blood test. A chest xray was also done. Doc mentioned he seems to have a bit of lung infection, so we were sent home with antibiotics.

On Monday (7 November), he slept and slept and slept. I brought him back to A&E and he was promptly admitted for lung infection.

On Tuesday, we were informed he has adenovirus, which is a common enough virus and gives people a cold/flu, but it hit M harder than usual. So it has infected his lungs.

Over the next few days, he just continued to deteriorate in front of our eyes. He would sleep for hours on end, wake up but just lie there. Didn't want to eat or drink. It was extremely painful to watch.

On Thursday, doctors confirmed he has Kawasaki Disease, and recommended he be given a dose of IVIG. The dose ended today (Friday 11 November) at 2am. His fever, however, did not subside like it was supposed to. He did not make any significant improvements like other KD patients.

Blood test was done again and his inflammatory markers have gone up. His lungs sounded worse than before. His fever is still lingering around 38.5. Now we are waiting for the blood test for adenovirus count to come back.

Either way it's not looking good for M simply because he is not showing any sign of improvement. Either they are going to start antiviral drugs (that can cause toxicity to his kidneys) to control the adenovirus, or they are going to give him another dose of IVIG.

It's really really painful to watch. To watch him be this sick, this sad. I hope he's too young to understand why he is going through all these poking and feeding of medications. I hope these things done in the hospital has no lasting effects on him.

I want to have my happy M back...I've prayed a lot and am holding on to faith with dear life. Because that's the only thing I have left. I try to tell myself God will heal him in His time, but I can't help crying buckets everytime I see him and remember my happy boy...