Partnering for Health

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 intubation 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.