19 September 2013

D-I-Y Button Change

I finally get down to changing Vera's leaky Mickey button. It is a simple exercise, and I attempted to do it and take pictures at the same time. 

Step 1: Draw out the water from the balloon to deflate it.
Step 2: Gently ease old button out of tummy hole.
Step 3: Insert new button and pump up balloon with new water.
What a cool invention.

Flat Out For 2 Weeks

Our caregiver leaves a note for Vera.
Every 2 years, caregivers get home leave of 15 days.

Each time it comes around, I brace myself for two weeks of sleeplessness.

Because I would have to sleep with Vera, and her Bi-pap machine.


I would stay up for as long as I can hear it heaving in and out with her every breath, until the rhythmic muffled whistling lulls me finally to sleep for a few short hours. Each time she stirs, the rhythm is disrupted and I awaken. If she shifts and her masks leaks, the hissing sound of escaping air makes me jump out of bed. Yes. I am that light a sleeper.

So when our caregiver left for her well-deserved break, I asked Ian to sleep with Vera instead. Problem is, Ian is a sound sleeper - so if her mask had a leak and the alarm sounds, it is likely he won't hear it. But I took the risk. I needed to sleep well to look after Vera and Daen in the day.

On Day Two, Ian catches a cold from sleeping in the air con room with Vera. (We've tried, but the girl just won't sleep well without the cool comfort.) Usually, he's well in a couple of days. This time, he takes a week to feel a little better.

That one week, I slept (I mean, didn't) with Vera, and in the day felt the weight of her 14kg frame on my not-quite-so-youthful body. At one point, I was on the brink of falling sick myself. My all-time fear, is that if I had to care for Vera, she'd catch the bug and then, we'd seriously not be able to manage on our own.

We scraped by, grateful for the help from my mum, who came daily with lunch and cook our dinner.

In a family with a high-need special child requiring machine aids, an adult/kid ratio of 2:2 leaves no room for sickness. 3:2 is almost a necessity for sanity.

16 days later, Beth returns as her note promised. My body gave out and I fell sick the very next day.

While I'd like to think that I am still young, my stamina and energy has clearly drop over the years. The next time round, I am definitely getting a home nurse to tide us over.