Tonsillectomy Canceled Due To Narcolepsy

My daughter’s scheduled tonsillectomy was canceled because she has Narcolepsy. We learned about it the day before her surgery when the Anesthesia Department at the hospital had concerns about using anesthesia on her. She had already been cleared by her pediatric cardiologist, by the Ear Nose and Throat Surgeon and had the pre-op blood work and echocardiogram done.

The news was given to us by the nurse who did the intake at the hospital. We were shocked! We had been planning this surgery for a long time, but something always prevented it. Now we thought we were in the clear, the hospital canceled Sammi’s tonsillectomy.

Frustration and Confusion

We were very frustrated, not only because of the wait, but because of the preparation that went into getting my daughter ready for having her tonsils out. She has medical issues and she also has anxiety, which is not being treated at this time. (We had recently seen the psychiatrist and got a prescription to help her with the anxiety, but it would take a while to start working. We put off starting her on this medication until after the surgery.)

Going to a hospital, even for the pre-op work, had my daughter stressed out. Thinking about the surgery and the recovery had her nervous. My husband and I talked to her about this, trying to ease her fears.

Does Anyone Know What They’re Doing?

During the day of the pre-op, I got a call from the ENT office asking what happened at the hospital. I was told the nurse would call the sleep doctor’s office to see about getting clearance. I waited until about 3 PM and called the office to see if there was an answer. I mean, is she or isn’t she having her tonsils out?! I was told there was no response yet, but the nurse would call.

No call at 5 PM or after. Sammi went to bed after we told her the surgery was definitely canceled. My husband called work to let them know he’d be coming in after all.

Say What?

What do you think happened at 8:40 AM the next day? The hospital called asking us why we weren’t there. Yup, the sleep doctor’s clearance had gone through, but no one bothered to tell us. I explained the situation to the person calling and yes, I lost my temper. The doctor’s office called and told me that someone would have called us if the surgery was canceled, even if it was late at night. I lost it.

Next Case

After all this, my husband and I decided to wait until we get the second opinion we’ve been planning on for the diagnosis and treatment of Narcolepsy with a pediatric neurologist. And we may not be using the ENT office again.

Recommended Reading: Good-bye Tonsils! (Picture Puffin Books)