Tuesday, June 20, 2006

Crucial Point

It seems like what we went through today happened over several weeks and not just a little over 12 hours. I may have lost a year off my life just because of today.

There seems to be some agreement among the doctors here about to proceed. Without delving too much into the personalities involved, one line of thought is that Logan needs the arterial switch, or Jantene, procedure, and he needs it now (as in the next several days). The other line of thought is that the pulmonary hypertension increases the risks associated with the Jantene too much, so he should instead receive the artrial switch, or Mustard-Senning procedure, about a month from now when (if) the pressure on his lungs goes down. For reasons I don't really understand, the pulmonary hypertension has created a window of only a few days to go the arterial switch route; after that we can only do the atrial. It's all maddening.

We spent the morning listening to and considering opinions, and then I spent much of the rest of the day trying to get second opinions in St. Louis and Kansas City and doing a bit of uneducated research on my own. My wife spoke to one mother whose child had recently had the Senning and was now doing quite well. She then spoke to another mother who child had had the Jantene, and that child is doing very well.

My research this afternoon turned up what I thought I had already read: there are higher rates of longterm problems with patients who have had the atrial switch--not just with the heart, but developmental/learning problems and other things. That's one reason why the arterial switch seems to have become the procedure of choice--the "gold standard of transposition repair," as one website said. But as one doctor explained this morning, the arterial switch is relatively new, and most of those patients have not yet reached adulthood, so no one truly knows how well those patients will do in adulthood. But I've seen some fairly grim survival rates for the atrial, as opposed to the survival rates for the arterial--something like 96-97%, and I figure that at least a couple of those 3% were maybe run over by cars.

So until I know more, I feel like we're going to have to make a choice between a higher risk procedure offering a much better possible outcome, versus a perhaps lower risk procedure that has much greater chance for longterm problems. Not a good dilemma. But if we actually have a choice, I think I'd take the short-term risk that offers better long-term results. I know I'd choose that if the surgery were being performed on me. (Strangely, I didn't think of it that way until just now, as I'm writing this. But there's no doubt in my mind.)

I believe that Logan has received good care to this point, and I'm not going to start disliking a doctor simply because he tells me something I don't want to hear. The second and third opinions we're seeking may turn out the same, in which case we're likely to stay here. But if they're different we may be elsewhere in just a few days. And I'll be five years older.

P.S. I wish I could blog at the hospital; I don't have anything to read right now, and while I've been working on the Savant novel when I am able to concentrate (not so much anymore), it would be a nice distraction to be able to post about this difficult situation and research various procedures very quickly. Plus, there are work-related things I could take care of if need be. But no: apparently the university wireless is not available there and the hospital's wireless is restricted. I've tried both proper and "extra-proper" channels to see if I could just get a temporary key, and so far I've gotten nowhere.

3 Comments:

Blogger GoofyJ said...

We continue to pray, especially through this extra tough decision that you are forced to make, and we hope things turn out for the best, whatever the decision may be. That is too bad about the computer problem. They don't by any chance have a computer lab at the hospital do they? They do at our hospital and we used it a number of times for email and things. Good luck with that.

11:28 PM  
Blogger Lein Shory said...

goofyj,

Thanks for the kind thoughts, and thanks also for the link to your blog. I haven't visited yet but I will. It helps to talk to other people who have experienced similar situations.

Regarding a computer lab, the university health sciences library is more or less on the hospital grounds, and there's dial-up access if I want to jump through all the hoops. It's not that big of a deal, but it would be nice to be able to look up and research a term, condition, or procedure right after a physician or nurse mentions it.

11:40 PM  
Anonymous Anonymous said...

(1.) I think you're on to something about what you would decide for yourself regarding which procedure to choose. Your son can't speak for himself right now but has the same genes and therefore it fits somehow that your own hypothetical decision would be his.

(2.) Ask the doctor about a key, tell him you need to blog, research, etc., and if he knows anything it would save you time, and if he could look into it (assuming it's a he and he's hip to wifi, otherwise find a young doctor or nurse for assistance). And there's always Word (sans the instant gratification of "publication").

12:37 PM  

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