Thursday, February 7, 2013


We make them nervous.

We come with sick kids - sicker than most on a daily basis, but sometimes just sick like any other kid.

("He isn't on oxygen normally, so he can't go home on oxygen, even if you have it at home, because we don't send kids home on oxygen."

We come with our gear, all beeping and whooshing and flashing lights, this bag and that - literally holding our childrens' lives in our hands.

(" have a lot of equipment here.")

We come with knowledge - we know their words, their secret codes. We can understand the big words they often use to show how smart they are, how much more they know than the patients they're caring for....and they are afraid they're not that smart.

("she's on a ventilator, and I'm guessing mom knows way more about this than we do")

We come with familiarity. We do things every day that most of them do once in a great while. That familiarity gives us confidence, and their confidences on these things is not that great.

("Oh my God, he has a trach! I hope you don't expect us to do anything with that!")

We make them nervous - we are not doctors or nurses, but we know this stuff better than anyone. We can change a trach in our sleep, silence a vent in the dark, set up and run a nebulizer before they'd even find all the parts. And they're never quite sure what their job is at that point.


Those quotes are all real quotes that we've heard over the years. Many have been brought to mind, because Acorn has been in the hospital with RSV and suspected pneumonia for the last 5 days and is finally home; Leaf has been in the hospital for the last 2 days "just in case." We've argued with doctors about whether or not Acorn can go home on oxygen (*his* pediatrician sent us home that way today, which was good because Acorn was bouncing off the walls, with instructions to come see them Monday, hopefully without oxygen). Everyone agrees that we *could* manage Leaf at home, but they want to get past the risk of things getting worse.

Hospitals are supposed to be the place you go when you need skilled medical help. For families like ours, they're scary - you don't know which person you talk to will have enough knowledge, and whether or not they're willing to admit it if they don't know. You have people second guessing every last thing you have spent months working out, from ventilator settings to feeding choices to how to get a child to sleep.

But they can also be good places - where the first words out of the mouth of a nurse or respiratory therapist who's known your child a long time is not "Oh my god!" or "I can't do that" but rather, "He's so big!" or "she's still got that smile!" They know how far you've come, and they start there. Those people make our stays a little brighter.

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