The tapestry of the life of a medically complex family

Archive for May, 2014

TheUsual

By the time I have the help of another nurse, it will have been 129 hours since the last covered shift. The kids are on “sick plan” – 8 scheduled nebs a piece, with additional nebs for break-through wheezing or congestion. 29-30 nebs every day, on average.

Tonight, for the first time in 2.5 weeks, all 3 are getting oxygen saturation reading of 99-100%. Maybe I will be able to drop off to the “regular” of just 6 nebs/day.

5+ days. 150+ nebs. Our last time trying ‘baseline’, my youngest spent half the night at 89…

It’s exhausting but extra nebs is better than going in. Whatever this is, I want it knocked out of the park. A couple more nights, some really good days, maybe Monday.

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Write

There are reasons I haven’t written –
None of them good.
Each of them valid
In their own esteem.

Not sure WHEN –
Or if I’ll return –
HOW?

I have been thinking.
I have been introspective.
My journey continues.

The challenge. The joy.
The angst.

We are near healthy,
Never well.
But whole & safe.