Monday, October 5, 2015

I am at a loss today.

I learned that yet another trach mom I know has to face an unbearable truth: her child died.

Yet again, due to negligence. Or a nursing error. Or whatever nice words the agency and the police plan to use to explain it away.

Always, it's "an accident" and "accidents happen" and they're not really liable for anything that went wrong.

Except, you know, they are. Nurses are licensed professionals. The agency is covered by insurance, and licensed and accredited. They are supposed to be the help that families of complex kids need - it's not like we can take a child with a trach to a mainstream daycare (they'll tell you their license and insurance don't cover that kind of care, and they aren't trained).

And these kids are fragile, and you should have expected that sooner or later, they'd die.

Except, you know, there's dying from their condition, and there's dying from a caregiver choosing to do something that leads to death.

But what you find out over time is that not all of those nurses have as much training on trachs and ventilators and feeding pumps as parents are required to have to take their child home. That their training in meds is not always what you'd hope (like the lady we had who charted that she'd given both an albuterol inhaler, and a nebulizer, in the same 1 hour period). That their understanding of the job is less than you'd expect - like the ones who think working nights means they get to come to work at your house and sleep, instead of monitoring your child while you sleep.

And if you can't trust these professionals who are sent to your home to be helpful, and to care for your child.....who can you trust?

I'm weary. We've been trach free for good for about 15 months now, and I've left most of the groups that are trach related because I can only handle so much drama. But....these things travel back to me, and we're there all over again.

I hug my kids every time it happens. Because what else can you do, other than think "it could have been us."

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