29 March 2016

Unchartered Waters

The Trisomy 18 handbook for families says:

"The length of time you will have with your child will be, in large part, dependent on the life-threatening conditions your child experiences."

Given that Vera does not have any heart conditions, we have had a good 8 years with her so far, a miracle in itself.

Which is why this infection caught us totally off guard.

We have gotten used to her bi-yearly hospital admissions, usually for an Upper Respiratory Tract Infection, or Gastroenteritis. She'd usually ride it out in the normal ward, then return home in about a week.

We thought this time would be no different.

As it turns out, we were actually heading into a hurricane.

The telltale signs were there.

Her caregiver had mentioned a week of fitful sleep in the days leading up to the onset. Unusual, as Vera now sleeps well on normal days.

Then the during the first 2 days, it seemed strange that I'd suction but little phlegm was produced. Normally, thick green mucus would come out on the first day, a good sign she's able to clear.

On Day 3, she seemed unable to settle. And on Day 4, when I looked at her tummy, was when worry set in. It was heaving in and out, something we've only seen once before when Vera was 2 - and that led to Pneumonia.

Dr M listened to her lungs, and said it had clearly progressed. (I think they use that term instead of 'worsened' so as not to alarm parents.)

Vera was promptly moved to High Dependency. Strangely, no chesty phelgm sounds on the entire Day 4, not good cos we need the bad stuff to keep coming out.

By night of Day 4, she was breathing laboriously, even on the bipap.

Within the day, we'd gone from expecting a recovering Vera to being faced with the decision to intubate her.

I hesitated, knowing Vera is difficult to intubate and that it would be painful and she's need morphine and  sedation. But looking at her struggling to breathe, I changed my mind. No parent wants to see a child struggling to breathe. Doctors went ahead, while we assured each other and ourselves that we'd made the right decision.

Dr S said later on, that given the strength and weight that Vera has built up over the years, we should take heart that she's in the best possible state health-wise to fight such battle.

I gave Vera my index finger and she clasped it unusually tight. She looked at me and I sensed her fear.

I whispered to her that they were going to do something, and asked her to be a brave girl. They rushed her into ICU to be intubated and to set a central line.

For the first time since her birth, we experienced an emergency intubation, instead of the elective ones for surgery while she's well.

We were wading into unchartered waters.