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I’m so frustrated…

too many doctor’s visits

seem to end like this–

Being sent away,

little said about what might

be going on & what to do about it.

Don’t get me wrong,

I know as well as anyone

the ambiguity that comes

with medical practice.

All I’m saying is

It would be nice to see

some consistency–

actually addressing

parents’ concerns,

stressing the fact

that their son can’t tolerate

any food or liquid

without vomiting

or tears from pain.

I’d just LIKE humanity to be

The rule in healthcare,

not the exception.

Don’t even get me started on the lack

of clinical reasoning & critical thinking

when they arrive at a “diagnosis”

in five minutes with no formal assessment.

I get it.

We’re all just guessing.

But at least put forth some effort.

That’s what I don’t understand.

Is it that you’re overwhelmed

by having to see too many patients

in too little time?

Is it a failure of academia–

how they perpetuate the notion

that medicine is merely

an applied science?

It only reinforces my opinion

Piemonte’s Afflicted

should he required reading

for every healthcare provider

in all fields.

It’s a bit surreal

to have to deal with this so often

but then, unfortunately,

simultaneously, not surprising.

Tears fill my eyes.

I’m at a loss for words

as I sit here and watch him

grimace & squirm

from discomfort and hunger.

You all want to know what this rare-warrior

medically-complex trach life is REALLY like

to start off this “Trach Awareness Week?”

It’s days and nights when you’re left

to think & troubleshoot on your own,

disenchanted from the countless questions

with no answers, from lack of compassion

when it matters most.

It’s advocating

and fighting and pretending to be strong

while you struggle to juggle being a

nurse, physician,

respiratory/physical/occupational/speech therapist

etc

etc

etc

all without formal training

(except for one, in my case).

I’m so frustrated,

though I don’t have time to be.

Solving the issue

is now up to me

and my little family alone

after wasting time

and resources

trying to find the kind of care

that has grown

so elusive

within this broken system.