Two More Cents

Here, now! Let me jump on the Shands Stinks Soap Box too, for a minute. You know I can never leave well-enough said alone.


It has been put forth in discussion that the Shands team may expect to get a "by" on blowing the coordination of Gracie's treatment, as they have taken on the management of her ERT as a "professional courtesy" to their colleagues at Fairview, who are going to pull down the lion's share of the cash from this cow by having scored the transplant itself. That idea makes my heart sink.


ERT may be a simple procedure, but it is no shave-and-a-haircut routine. After all, HSCT is also a simple procedure. The chemotherapy to prepare the patient is not revolutionary, either. It's the surrounding care: attention to the patient's inherent and precipitant conditions, and anticipating her evolving needs, that determines the difference between great care and substandard care. Someone who is experienced with Hurler patients and their families, and we are assured that this is what we are getting, would be hip to the reality of Gracie's parents' experience, their sense of urgency, and the degree to which they have become absolute hostages to the scheduling of Gracie's health care matrix.

This kind of ham-handedness is, I think, a symptom of a carelessness that, even in small things, cannot and should not be tolerated when the stakes are this high. It makes one wonder what other, less obvious but more dangerous slips might occur because something just didn't get done. It's an old and often sad tale. Little mistakes can cause big problems for vulnerable patients. Someone on this team really should acknowledge this openly to Gracie's family.

They really should.