I was looking at Feisty Pants' wheelchair today. Zippy's (that's its
name) one wheel is getting wonky and throwing off the alignment. I don't steer
well to begin with and that is not helping. So now, I need to call the medical
supply company and have it looked at. We go through this a lot. We use our
equipment. You know, like nascar drivers use cars, and so tend to be hard on
all our equipment. I don't believe in wrapping children in cotton wool and
hiding them away from the universe. Not even disabled kids, ESPECIALLY not
disabled kids. FP is, before she is anything else, a KID. She likes mud and
bugs and roughhousing and loud music and (shudder) fart jokes. (I blame her
father for that one.) So, obviously we are hard on equipment. And it's hard to
roll down hills and ramps at any fun speed while yelling "No brakes. AHHHH" when
the alignment is off and you have to slow down to steer. Faking a crash is a
hoot. Real ones suck. Almost as much as having to go slow. (Slow is the worst of
all. Just ask Feisty.)
But, anywhoo, the point is that I'd like to give a few
pointers on equipment. There is something that bugs the living hell out of me
concerning both medical equipment and medical advice. You never really get
any. At least, not with any USEFUL details. My daughter has had a wheelchair since
she was three. She spent five years scraping her ankles against the footpedals
(cutting the hell out of them in the process) while we went to doctors,
specialists, hospitals, three or four different medical supply companies that we
deal with on a weekly basis. And it wasn't until a teacher pointed this out-
THEY HAVE FRIGGING PADDED FOOTRESTS AVAILABLE. Which her insurance happily paid
for with a simple note from her doctor. What the hell????? FIVE YEARS and not
one person told us this was available. Same thing with her now specialized head
rest that does NOT bruise the hell out her shoulders everytime she tries to
adjust her position in her seat. This happens all the time and just pisses me
off to no end. I won't be upset if some rep from a company wants to upsell me.
I am very good at saying no when I need to. But I cannot get my child something
she needs if I don't know it exists. So why don't you people tell us??? It's
often the same case with medical treatments. I went to doctor after doctor and
hospital after hospital until I found one that offered me anything other than a
tracheostomy for FP. A simple tonsillectomy and adenoidectomy was all she
really needed and her health improved on an exponential level without having to
cut a hole in her throat and get rid of her pets. And I would NOT even known
about it had not a respiratory tech not approached me off duty to whisper in my
ear. Same thing when she was six weeks old and a doctor dismissed her as a
vegetable (again a therapist approached and literally whispered in my ear "My
ass, she's not in there. Go find a way to let her out")
So, if you are new to the jungle ride of rising a kid like
FP, some advice. Don't take the first answer without asking a million
questions. What alternatives are available? What can the alternative offer?
What if I don't like the results? What's the next step if this doesn't work?
What options can make this more comfortable? (That's a good question for both
treatments and equipment.) Who else can I talk to about this? What is the
exact name of this (treatment,procedure,medication,therapy,equipment) so I can
go home and google it? ALWAYS go home and google it. Once you get the hang of
being an informed medical consumer (or as we proudly call it, a giant pain the
ass) you'll quickly learn which details to sweat and which ones to slide on.
And any doctor or equipment provider along the way who cannot appreciate that is
frankly, not worth the title.
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