Friday, May 19, 2006
The meeting with Dr. Watts was easier, and harder, than I expected. I guess it was just different. I kind of expected him to do most of the talking, and I suppose he thought we'd be asking more questions, so getting started was a little weird. Once we started talking though, it went pretty well. I only asked 3 questions, easy ones really, but we talked with him for, I don't know exactly, about an hour I'd say. He's such a good guy. You know how you meet people, you just get a vibe? Well, he just radiates a humble sort of wholesome feel. I like him. A lot. Even more since we had some time to just talk. And just talk is what we did a lot of the time we were there.
So, what were my questions, right? Like I said, there were only 3. I asked what sort of infection was it that caused the sepsis, because at the time of his death we didn't really know if it was the fungal infection, or something else. It was the fungus. No surprise there really. I suspected as much. I didn't ask if the sudden drastic change in his condition was related to the Angiojet he'd had. I know that they said part of the reason to get rid of the blood clots was to get rid of any possible yeast colonies that might be hiding in them. My gut says there was a colony in that huge clot that was set loose into his bloodstream because of the angiojet drilling into it. Just a hunch, no medical backup there whatsoever, which is why I didn't ask. I, honestly, just don't want to know. If I'd asked and Dr. Watts had said yes, that would have started a pointless spiral of anger and self-doubt.
And while we're talking about self-doubt, my second question for him was, "How long would Nova had lived if we'd decided not to have the surgery?" This was where it got to the "harder" part of this meeting, because this was a question I'd been wanting to ask for years. I'd wondered it inside my head a thousand thousand times. But I'd never said it out loud. Saying it out loud was hard and is where the tears started.
Now let me explain that question, because it's as much about Alexis as it was about Nova. See, she only lived 12 days, and her death was directly related to the surgery, and her body's inability to readjust to the new pathway of her bloodflow. At the time of her surgery, I thought a lot about refusing the surgery, and even more when she died. I always regretted her surgery because I felt we'd have had her longer if we'd refused it.
When they handled Nova's care so much differently simply because they'd learned in the five year interim that the babies have a higher chance of survival if you wait until 3 months of age, I wondered even more about our decision with Alexis. So obviously, even though we never once considered any course of action other than the one we took with Nova, I had to ask.
His answer was not a number. He couldn't say, "Nova would have lived to be 2." What he said was, basically, that it would not have been much longer. That the way his numbers took that dip there a few weeks before the surgery indicated that he wouldn't have done well for very long. He also said, "I know what you're doing, and I don't want you to doubt yourself on that decision." He said he'd had patients who opted against the surgery. He explained that with these babies, the "blue blood" that causes the cyanosis builds up in the system, and causes the blood to thicken, which causes all sorts of other complications. That they live a life that is far from normal or comfortable, they suffer a lot in the end, and die miserable (miserable, miserable, miserable) deaths. He said that if he had to make the decision again, he'd do it again, the same as this time, and hope for fewer non-cardiac complications and infections.
That answered all my questions, removed all doubt, for both of my children's cases. Obviously, things didn't go the way we wanted with either child. That goes without saying. I wish I still had them both, I wish we'd had them longer at least, but not at their expense. I'm just not selfish enough to have ever chosen to make them suffer. I still feel like the last 6 weeks of Nova's life were wasted, lost in a drug induced stupor. I will never be "ok" with the idea that for 6 weeks and 3 days, he was not hugged or snuggled or held, but I wouldn't trade those 45 days, not if I were trading them for days full of pain, misery, or pain for him. I wouldn't wish one moment of pain on him. At least, with the way things happened, he was never hurting. Drugged, unconscious, unaware of our presence, yes, but never was he in pain.
So, thank you Dr. Watts, for putting to rest five years of doubt. It was a huge weight from my shoulders. I don't know how much 5 years of regret weighs, but I walked away from that meeting considerably lighter of spirit.
My 3rd question was completely unrelated to the care we received with either child. I wanted to know how long it had been since he'd done his first heart surgery, fifteen years.
He's gone through 20 years of schooling, and 15 years of experience. He takes each case personally, he truly cares about the kids. He goes every so often to underprivileged countries and performs surgeries (pro-bono no doubt) because, he said, "I get so much out of it." He says when he stops caring, it's time to quit. All of these things are a part of the vibe I mentioned earlier. Each component is intangible, I mean, it isn't hair color, or height, or any physical quality, but you can sense these things about him and they put you at ease, he is implicitly trustworthy, and comfortable, without any effort.
Anyway. It was hard. I cried more than I wanted to, less than I thought I might. The medical questions I had were answered amply, and laid to rest some real issues for me, and erased some major regrets. I try not to have regrets, they're typically useless and unproductive, but sometimes the big stuff manages to wrap a few fingers around my scrawny little throat and threaten to strangle me.
The aftermath has been an emotional sort of night, from one extreme to the other. I vacillated (oscillated even) between angry and weepy, and I don't envy my family's position of "my family" tonight. I didn't make it easy on them. This is another in a run of marathon length posts, for that I apologize. And I have more, but it will wait.
Sorry it took so long to let you guys know how it went. My computer wouldn't connect (highly unusual for cable internet, I'm always friggin connected damnit!) We spent several hours troubleshooting and eventually, after much too long, discovered that it was a bad wire from the router to my PC. Thankfully we had an extra, but you can blame the non-connectivity problems for the ridiculously long post. I couldn't actually post which gave me much too long to babble into MS Works.
Sorry. More later :)
posted by Erin @ 2:19 AM