a few thoughts from Madison

You know, to me, the most striking thing about this whole experience is realizing in retrospect that we worried about completely the wrong things at almost every step. Fortunately, the one worry that I think was completely justified (would Tina as we know her survive this?) turned out to be a complete non-issue; I am convinced that this is due more to the quality of the surgical team and her fantastic beginner's luck than to the worry itself being unrealistic.

Our rating system for hospital personnel missed some critical points, but did change the whole nature of our voyage through the medical system in ways we had not anticipated. (We were rarely invited to take an active role in hospital life, and doing it on our own, even in this small way, made a huge difference.)

This blog, which began as a response to our worries about keeping people informed and preserving our peace, made everything feel much more solid and provided emotional support in ways we never expected.

One of my big worries was how we would hold everyone's attention (including our own) once the really dramatic bits were over. How can months of recovery compete with the five-minute news cycle? Brain surgery is so last week. (OK, two weeks ago, but you get the point.) My mum captured this perfectly when she remarked after the surgery, "it's benign, it's out, it's done now." If the woman who had her head cracked open was tired of this story, how would all of you react?

And I was wrong. (So far.) While I know folks aren't checking the blog the way they did for news of the surgery and its immediate aftermath, it's clear that some of you are still out there following our story, and we've continued to receive an outpouring of support from everyone.

Probably a lot of my fears stemmed from my own feelings of guilt about deserting my family (it still feels like that, even though I know they don't need me and are moving forward in amazing ways).

But mostly, we just worried about the wrong things out of ignorance. Before the surgery, we asked lots of questions about taking care of the wound, signs of infection, and so on, but not a single question about potential side-effects of any of the medications she'd be on. With such a great medical team and a Walker on triple antibiotic ointment duty, infection probably wasn't much of a risk. Meds, on the other hand, always do things they aren't meant to. The morphine caused terrible itching, the steroids caused problems with reading, the valium made her anxious. We were quite worried when each of these symptoms cropped up (was she getting a rash? did she have brain damage?), when a couple of questions could have told us all about what the meds might do. The effects of the steroids, for example, were apparently completely predictable, but we didn't know about them.

I really think that we ought to teach people more about health and the medical system. The internet is a great source of information, but a few days' training on practical skills might do much more good. Maybe we should teach kids about that along with the food pyramid and the importance of tooth brushing. There must be good guides out there about how to be a patient (or family), but it's information that could really stand to be more widely disseminated.

Thoughts?