Our worst ER visit ever

James was diagnosed in 1998 at Riley's Children's Hospital in Indianapolis, Indiana. He received most of his care over the last ten years at Children's Memorial Hospital in Chicago, Illinois. He has also been to Texas' Children's Hospital in Houston, St. John's Hospital in Springfield, Illinois, NYU in New York, Children's Hospital of Philadelphia, and now Levine Children's Hospital in Charlotte. Needless to say, we have been to a lot of ERs and met a lot of doctors, many with the typical, cocky, "God" syndrome.

BUT, this neurosurgeon that we met last night at Levine Children's Hospital is the worst doctor we have ever met, by far, bar none. Although James clearly had a pocket of infection in his scalp, sitting right above shunts, he did not want to do anything for him then because "it was 7:00 Wednesday night." "We'll have someone look at it tomorrow." The more I tried to emphasize my concerns that this was a potential risk for disaster, the more he emphasized that I was not the doctor and how dare I try to "manage his care." Hmmmm.....I think that's been my job for the last 10 years. Twice, he pointed his light at me and said, "You are wrong! You are NOT the doctor and I am not going to rush him to the OR just because you want me to." So.....how about rushing him to the OR because he NEEDS it. We were clearly dealing with an ego problem. By the end of our five minute conversation, and many blantant condescending remarks from him to me, I was shaking and in tears - scared more than anything of what was going to happen to James. My sister demanded a Patient Advocate to come and then Dr. Jekyl turned into Mr. Hyde.

Thankfully, the plastic surgeon showed up and agreed that the wound definitely needed debrided in the OR, but still deferred to the next day - I think out of respect for the neurosurgeon. I simply informed them that if they dragged their feet at caring for the problem and anything happened to James as a result, I WOULD hold them responsible. Consequently, they decided they would be willing to debride the wound under conscious sedation in the ER.

Interstingly, this neurosurgeon who at first insisted that there was NO risk and that there may not even be an infection (even though the wound was clearly draining pus), then decided to look at the scans, confirm the infection, and see that, although the shunts were not in the immediate vicinity of the infection, the shunt catheter was directly beneath it - maybe even the cause for the infection in the first place. That doesn't sound like no risk to me.

They sedated James, debrided the wound (boy, was I thankful he was sedated - that was one disgusting wound), and cauterized it with silver nitrate. Then they sent us home with more of the special dressing and the silver nitrate. I'm not sure if that is something that is usually done....I suspect they just wanted to get rid of us.

Now, we will pray that the wound will heal properly and that I can find an appropriate neurosurgeon for James, because I will NOT be going to the group that that doctor is from.