Advocate for your child

Liam has been having screaming fits that, from our uninformed-first-time-parent experience, appeared 'severe'. All of the doctors, nurses and professionals kept telling us that "no, this is normal for a child with [acid] reflux." Based on our research, this was fairly consistent, so we uneasily acquiesced.

The fits began escalating in frequency, so we raised the issue again. Carolyn took in a video and showed it to our pediatrician.  She said that the behaviour was normal, but, to ease Carolyn, reviewed Liam's prescriptions and such. It turns out that he had outgrown his domperidone (gets things moving through his stomach faster) and we had incorrect preparation instructions for his prevacid (for reducing acid).

Four days after fixing both of these issues, still no screaming fit since the day of the correction.  He is much happier and sleeping much better.

I fully appreciate that Liam would not be alive without the level of care he received.  On top of that, had his care not been covered by OHIP, we very likely would have lost our house or at least our equity in it ($10,000 per day for 114 days + all of the followup).  Having said that, we have seen a lot of the medical system over the last eight months and if we had not been questioning and educating ourselves, there seems to have been something every step of the way that I feel would have gone seriously wrong. 

Most of the problems we saw distill down to information problems:  incomplete, not captured, not followed up, not shared, not current.  In defense, there was a LOT of information and a LOT of places where things did not wrong.  As a percentage, our experiences may have been perfectly within accepted norms.  This may be just the nature of medicine.  There is always one more person to help or just a little more that can be done and every choice is a balance of the minimum that can be done to derive the maximum return.  This is particularly true in a public system where we are trying to share the resources equitably.

Stepping out of the emotions our experiences, this is a very interesting systems problem.  I've often wondered if I could make a reasonable career servicing the medical industry.  It speaks to a need for a broader purpose than my current career path and there certainly appears to be a need.