I don't know if you all remember or not, but last August I went to Washington DC to testify before a committee at the IOM that was studying the use and safety of medical devices in children. They are about to finalize the report and I thought I'd share a quote they are going to use from my testimony.
Originally Posted by [b
Quote[/b] ]To lead a section in the chapter on reporting of adverse events,
we wanted to quote something you said during the August 31 meeting.
2310. The quote plus the following report paragraph are as follows.
"I never really thought about reporting that [problem] in
particular . . . . There are just millions and millions of things that
can go wrong." Melisande Statz-Hill, 2004
"This mother of a young child cared for at home with multiple
medical devices was making two points. First was that it did not occur
to her to report (to the home health agency) problems that seemed to
involve errors in the use of a device (in this case overtightening by a
nurse of ties for a tracheostomy tube) rather than a malfunction of the
device itself. The second point was that the opportunities for something
to go wrong-even for a family with private-duty nursing support and a
home health company that specialized in pediatric patients-seemed
Hopefully, this illustrated my intended point, which was that as parents, we need all the support we can get and even then, it is a difficult, stressful, and imperfect. Anyway, I think they got the idea that even realtively simple things can go wrong and cause lots of problems and we as parents have to be constantly on-guard to watch for problems with our medically complex children. I hope I did us good! (At least that was my intent.)
Melisande H. Mother to The Preeminent Grand Poohba Donovan (5/27/03), still some "resolving" apnea, on the autism spectrum and some cerebellar malformations. Trached since he was 6 weeks old. Recently DECANNULATED 4/16/09!! Big brother to Conrad!