Thursday, October 8, 2009

Did I not say... a narrative of the nettled neurosurgeon?

I did mention that I would tell the story about my daughter's neurosurgeon, did I not? I will begin now. We'll see how far I get.

Our younger daughter was born with Myelomeningocele, commonly referred to as Spina Bifida. One of the results of this is that she has a shunt in her head which helps drain the cerebrspinal fluid into her abdominal cavity.

When she was about a year old, she began to demonstrate some of the signs and symptoms that had been described to us that might indicate her shunt was failing. A shunt failure means that it is not properly draining the fluid and can cause severe problems, including death, similar to the effects of brain swelling after a traumatic head injury. So, we took her to the U.C. Davis ER in Sacramento.

Since she has a pressure sensitive shunt, she was ushered into the back immediately after triage and was soon seen by the staff. They decided that she did not have a shunt problem, but instead had a UTI, which led to a fever and the other symptoms she was showing. So, they prescribed whatever they did and sent us all home.

The following day, she was not improving, so we decided to bring her back. Upon arriving, they were astonished that she had been discharged the previous day, as kids that little with UTI's were supposed to be kept and watched. So, they admitted her and we spent the night in the pediatric wing.

In the morning, she was feeling much better. Her fever was gone, she was playing around and had no other visible issues except one. She had developed some swelling on her neck along the track of the shunt, which seemed to indicate that it had leaked some along her neck. So, someone contacted the on-duty neurosurgery resident, Dr. Torres.

I think the neurosurgeons must be paid on some sort of commission. Dr. Torres brusquely informed us that he needed to operate as soon as possible. When we told him we didn't know if we should do that, he insisted and said the Operating Room(O.R.) would probably be available the following day, but they would let us know when it would be before he operated, and he left the room.

Diane and I began to think, based on our daughter's condition, that his plan was ridiculous, so we resolved to ask for a second opinion. Soon after, a nurse came in and told me that they had the O.R. ready and they would be taking our daughter off to the surgery. I told her no, I didn't want them to do that. She looked shocked and told me that she would let the Dr. know, but that he would not be too happy.

Apparently arranging these O.R.'s is kind of degrading for these Doctors anyway, and then after doing so, to be told that the patient isn't cooperating is downright infuriating. At least, he was was infuriated. He called and screamed in my ear and told me he would discharge her against medical advice and that we couldn't just say "no" to him.

I told him that he had said that he would get back with us before he scheduled any operation, which he did not do and that we wanted someone else's opinion, preferably a pediatric neurosurgeon. Dr. Torres informed me that their was no such thing as a pediatric neurosurgeon and threatened again to discharge us against medical advice. I told him that I didn't care if he discharged us against medical advice, which made him more angry.

I was hoping he would come discuss the matter in person, but fortunately for him and my current career choice, he did not. The nurses did come in and congratulate me for talking to him like that. Apparently they did not particularly like him either.

I stood guard over her for several hours, but no-one ever came to try and take her away. I was half expecting the burly guys in the white coats or the cops or something to come and wrestle her away, but they didn't show. Some time later, Dr. Muizelaar, the Chair of Neurological Surgery at the hospital, came and looked at her. He agreed that the swelling appeared to be incidental and surgery was one option that could be exercised, but so was waiting and observing.

She was fine, and we were soon assigned to Dr. Boggan, who is known to be an expert in Pediatric Neurosurgery.

Our daughter did eventually have three shunt repair surgeries, two with Dr. Boggan (pronounced like Bow-Gun), and one with Dr. Kim. She also had a couple of urological surgeries with Dr. Kurzrock. On all of these occasions, we were convinced that the decisions that these doctors made was based on them making the best decision they could with the best information available.

I am sure there is some lesson about something somewhere in this story, you decide what it might be.

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