11 September 2012

Arthritis, Stitches & Spirits

Where to begin? 

So much has happened over the last 1 month. 

It started in early August with a suspected sprain on one of Daen's ankles. It was swollen. 
A pronounced bulge around his left ankle that is warm to the touch
and skin that's now brownish in colour.
We brought him to Chinese sinsehs. The swell remained. 

We brought him to A&E at a children's hospital. They took an X-ray and said that there was a hairline fracture. They put his foot in a bandage and told us that the swell would go away within a week of resting the foot. 

Rather happy to be staying at home and getting to watch
more TV than ever.
We were referred right away to the Rheumatology department (what the #%@? is Rheumatology) and within an hour Daen's ankles were ultrasound scanned and he was diagnosed with JIA: Juvenile Idiopathic Arthritis. 

On BOTH his ankles. 

What? My 2 year old boy has ARTHRITIS?

The doctor explained. It is an auto-immune disease whereby his body's immune system mistakenly attacks itself, mostly at the area between the joints, causing the surrounding tissue to become inflamed and therefore swell with water retention. 

The only other shock that equalled this was the day we learnt about Vera's diagnosis. 

Vera has a diagnosis, a life-theatening one. Okay, I can accept that. Now Daen too? 

So now I have 2 medically-challenging kids on my hands. When you're a seasoned traveller on this path you know what that means. More anxiety, more heartache, more waiting for improvement, more hospital visits, more medication to secretly administer, more side effects to deal with....the list goes on. 

After one month of mounting question marks as to why he has been limping has led to this.

Arthritis is categorised as such: 

Mild: In 4 joints or less. 
Serious: In 5 joints or more.
Severe: Whole body. 

The doctor put it this way, "If he's going to have arthritis, this is the best type to have,"

By that time, I was a wreck, and that did little to console me. 

It is now 3 weeks since that dramatic day.

Thomas the train set from his Godma help us to keep
him from moving for 24 hours after the steroid injection.
Daen has had a dose of anti-inflammatory steroids injected into both ankles under sedation. He has to be on anti-inflammatory drugs (Indocin) for the next 6 months at least. The swelling has subsided, but not fully. He doesn't limp now, but is still wobbly.

"My ankle is better, I don't need a bandage anymore" the boy declares happily.

Then 3 days after the injection, bam!

Just as I was slowly recovering my composure after the climax of the injection and subsequent 24-hour bedrest for the boy, he runs, trips, falls and cuts his head on a sharp corner. 

Ian picked the wailing boy up and blood smeared all over his T-shirt.

Blood coming out from the head provokes a different response as compared to blood coming out from say, your leg. 

Head = Brain. Blood = concussion. I went berserk. Stark mad. Even Vera falling off the bed didn't feel so crazy. There wasn't blood oozing out directly from her head. 

Holding an ice compress to Daen’s head, I dashed out the house with him in my arms as if was the ambulance. Ian broke a few driving rules. 

When we reached the A&E, I was determined to cut the queue. I shouted, "This boy’s head is bleeding, please help!"

We got speeded up. 

The gash was pretty deep, needing 2 layers of stitching: 2 beneath, 4 on top. But it wasn't a concussion. His brain is okay. He's going to be okay, I repeated to myself.

The boy fell in and out of sleep, I kept talking to him, comforting him. When my mother ("Grandma is a nurse" the boy knows) arrived, I offloaded him and burst into tears. 

It's been a week since the fall, and the wound is healing well. Daen can point you to the ledge where he cut his head. 

You'd think the story ends here.

Well, here's the straw that broke the camel's back: 

At the exact same period that we went through Daen's injection and fall, Vera started behaving strangely. 

It started with very bad sleep. We had increased her biPAP pressure upon her doctor's recommendation, based on the sleep study findings. We had to progressively increase it from 13 to 16 (Inspiration rate). We upped it to 14. 

A few days of bad sleep progressed to 2 whole nights of no sleep at all. She would stay awake, crying because she was so tired but she just couldn't sleep. Instead, she would stare fixated at the same spot at the ceiling. Her breathing would quicken, her legs would tense up and her hands would jerk frequently.

Here's a video of what it looked like:

It happened to be the peak of the Lunar 7th Month, otherwise known as the Hungry Ghosts Festival. Every year, Vera has had  bad sleep during this period in past years, but this time, her behaviour completely freaked us out.

When she refused to even let us carry her, or touch her hands, or look at us, we decided the best immediate course of action was to get her out of the house. We brought her to my grandma's place for the day. My aunt and grandma prayed for her. She finally slept in the car back home. 

We reduced her setting back to baseline. More family members came to pray for her the following day. I started to pray.

I think back now on how the events of the past month have just been beyond me. And it deepens my belief that there is a higher power orchestrating my life, our lives - Vera's and Daen's included. How their different diagnoses will pan out, is way out of my human hands.