BIG decision

We've made a big decision, or at least an important one that's going to have a major impact on life around here in the not too distant future.  That decision is to forgo nursing starting at the beginning of next year. 

In some ways it won't be too different than now, where we have week after week with multiple days and nights without nurses because there aren't any available who have experience working with kids with trachs who use ventilators.  But in others it will be a significant change, especially when we really need a respite from the physical and mental rigors of caring for a medically-fragile kiddo like Zachary.

Don't get me wrong; we have been really, really fortunate to have had the help and benefit of some very caring and well-intentioned nurses over the past 15 months since Zachary came home.  Might be a stretch to say we couldn't have done it without them, as we've been continually surprised by our capacity for adapting to each new challenge and learning how to care for such a labor-intensive little boy.  I wouldn't have thought I'd ever be able to change a ventilator circuit, replace a trach, or put a dislodged feeding back into place, but such tasks have become routine.

But we still haven't become fully accustomed to private duty nursing.  I still find it a little uncomfortable, if not downright intrusive, to have virtual strangers in my house day and night, each of whom has their own idiosyncrasies, like the one who used to throw bags of trash down the stairs, marking up the wall.  Or the one who wouldn't clean up.  Or the one who took their socks off in the middle of the night.  Or the one who almost always showed up late.

But there have been some very serious issues too.  Like the ones we found sleeping.  Or the ones who didn't know how to operate the medical equipment.  Or the ones who gave the wrong medication.  Or the ones who lied about doing treatments or taking safety precautions.  Or the ones who didn't know what to do in case of emergency.  Or the one who left someone else's pill on the floor of the playroom.  Or the one who left Zachary unattended.  You get the picture.

I think most of the nurses we have met are in the business for the right reasons.  Those that weren't were pretty easy to spot.  But good intentions just aren't good enough.   And all that caring and all those good intentions haven't always translated into competent care.  And it pisses me off, because I've entrusted these people with my son's life.  I don't think our experience is all that unique, unfortunately.  Other parents have shared similar stories.  I wish I knew why this seems to be an industry-wide problem and how to fix it.  That's another post for another day.

For now, we're planning and preparing to adjust to a nurseless world next year.  We figure it will take a couple months to get the house in order and establish routines for doing everything ourselves.  But we have so many open shifts now as it is, especially at night, that we're getting a lot of on-the-job training.  And we would be happy to train-up any friends and family who'd like to help out every now and then.  Just ask.

This may seem like a dumb decision to make, and who knows, maybe we'll come to regret it.   But it will be a big step toward normalizing life around here and further healing from the wounds inflicted by our tiny tot's early birth.