Sara's one-hour surgery took three and a half hours. The doctor’s
promise of "no pain" was a lie. The promise of "only one
incision" was, too. The "four-hour easy recovery" actually
involved 24 hours in ICU. We are only home now because we have
life support equipment.
Sara’s mad at us, but she'll get over it. I even expect her to
smile again soon. But for now, every time a family member comes
to visit her, Sara simply must tell them all about her hospital
visit, making full use of her hoarse voice and her cutest pout.
As for the family, we're hoping that the vagus nerve stimulator
(VNS) surgery proves to be the promised cure for seizures. The
VNS is like a pacemaker, stimulating a nerve in the neck, and
we've heard that many patients with intractable seizures have
benefited from this device.
The previous week. . .
Like many parents waiting for a doctor to come out after surgery,
my husband and I became agitated when the doctor didn't appear
until hours after the estimated time. When he finally came out,
he told us that everything was all right, but that nothing had
gone the way it had been planned, which didn't put us in high
spirits.
The doctor promised that we could go back and see our daughter in
an hour, but after two hours had passed, my fear level had
increased, and I grew more hostile. I pestered the young man at
the information desk until I finally got to speak to Sara’s nurse
on the phone. By the time they let me into the recovery room, I
was an emotional tornado, spinning black clouds around everyone
who came near me.
Sara was more than mad; she was scared and in extreme pain. The
doctors couldn't remove the incubation tube because Sara wasn't
able to breathe on her own, and she couldn't have pain medication
because her blood pressure wasn't stable. She was on the verge of
hypothermia with a temperature of 88.
"I don't think she’s getting the best care," I said to the nurse.
That was a mistake. As soon as I blurted this out, I thought:
"Careful, they can kick me out of here anytime they want to."
I guess I should have been a nurse instead of an interior
designer.
In Surviving Healthcare: How to Take Charge and Get the Best from
Your Doctor, Your Hospital, and Your Health Insurance, Pam
Armstrong says, "Remember, you should know about and have a say
in everything that happens to your body while you are in a
hospital. Your health should always be the focus of your care.
Hospital routines should serve your needs, not the staff's or
hospital's needs. Don't let yourself be intimidated by hospital
staff who seem to feel otherwise. To get the best care, combine
assertiveness with a partnering and empathetic approach toward
staff, who may have overfull workloads."
When the patient is a child or is otherwise unable to speak for
themselves, a family member must work in partnership with the
hospital staff to make sure the patient gets the best care. I
learned years ago that hysterical outbursts at nurses and other
hospital staff do little for my daughter. I've learned to keep my
mouth shut, to think first, and then to speak gently. That
doesn't mean that what I say doesn't count--I've just learned a
few key phrases that will show the hospital staff that I know
what type of care my daughter needs.
After mothering Sara (requesting heated blankets, wiping tears,
and straightening her legs), I explained my fears to the nurse.
Apologizing for my outburst, I told the nurse how scared we were
because the surgery had taken longer and had been more involved
than had been planned, and because Sara was in pain. Instead of
telling me to leave the recovery room, the nurse agreed to let my
husband come in, too.
Acknowledging my fears and keeping my mouth closed helped our
daughter receive the best care during her hospital stay. Sara, at
twenty-five, still needs total care because of disabilities.
Instead of placing Sara in an adult intensive care unit with many
patients and limited visiting hours, Sara was moved to Pediatric
ICU, where the ratio of patients to nurses is only two to one.
There was also newer equipment, but best of all, they allowed me
to sleep in her private room.
You too can learn to help care for a loved one when they're faced
with hospitalization. Just remember to partner with the
physicians and hospital staff to ensure that your loved one will
get the best care.
For more information about Surviving Healthcare: How to Take
Charge and Get the Best from Your Doctor, Your Hospital, and Your
Health Insurance, see http://www.SurvivingHealthCare.com .
After nearly 25 years in health care administration, Pamela
Armstrong, MPH, MBA, is on a one-woman mission to ensure
consumers that they get the quality care they're entitled to.
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