Thursday, June 15, 2006

Doctors and Empathy

As this long, intense week draws to a close, I am hoping that we are finally turning a corner with Robert. Last week was plagued by general pain and agony, as well as the fabulous constipation crises. This week was riddled with gastritis issues, as well as the second chapter of stool softener woes. And confrontations with the orthopedic surgeon, whom Roger dubs the least empathetic person he has ever met, which is saying a lot as we've dealt with all kinds of neurologists--and neurology is the specialty that bears the stereotype of having the practitioners with the worst bedside manner.

I have to admit, the orthopedic surgeon does not wear well--she seems OK at first, but she seems to have little experience or desire to confront and deal with the problems that disabled children face with an extended recovery such as this one. I shall be glad when we no longer have to deal with her. Just to be fair, I have also behaved inappropriately with much in the way of angry explosions, so I'm sure she'll be glad not to see me again either for a long time. I have nothing really to say in my own defense that I've not already said above. OK, excepting when we were discussing the problems we faced post-surgery and pointed out to her that one of her subordinate doctors miswrote a prescription for a controlled substance (Robert's narcotic pain reliever). Children's Hospital is in way downtown DC--when we finally got Robert up to Bethesda (a 30-45 minute drive, depending on traffic), we tried to fill the prescription and were told it could not be filled because the concentration was miswritten. We had to drive back to CNMC and get a new paper prescription, as the federal laws that govern controlled substances do not allow physicians to call in scrips or changes to scrips. We had to do this in a panic, trying to beat the clock as Robert was due soon for another dose and the pharmacy was soon to close.

We explained this to Dr. Orthopedic Surgeon, who remarked blithely that that must be some weird kind of Maryland regulation--if we'd lived in Virginia, it wouldn't have been a problem to phone in a correction. Having dealt with controlled substance scrips before at the neurology practice at CNMC (also located in Virginia), I know for a fact that that is not true. And not a word of apology about her staff's mistakes or the anxiety we were caused as parents. And this was after upbraiding me about having yelled at her staff. Even in Virginia, a state in which people can carry handguns openly and drive without seatbelts and do all kinds of other right side of libertarian things, I do not believe the DEA cuts Virginia pharmacies any special slack.

But enough of Dr. Obviously-George-Bush-Voting Orthopedic Surgeon.

Robert went into reflux meds crisis this week, which is excruciatingly horrible, both for him and for us, who are driven half-mad with his vomiting, pain, and inability to take tube feedings. But we did discover after going over all of the observations we had made, both recent and over the last few months, that his Zantac dose seemed to be causing problems. We spoke to the gastroenterologist (who is King of Empathy), and he reviewed everything and has given us the green light to discontinue Zantac and go with Zegerid alone, and redid his dosing schedule. We may have to add a Zegerid dose, but at least we are pitching one medication over the side of the ship. Over the last 6 months, we have gone from 6 regular medications for Robert (with different, multiple dosing schedules) to 4.

So, whoever's out there reading, cross your fingers and knock on wood. We start tomorrow on a newly revised gastro plan.

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