Well, it's been an intensely busy couple of days, and a lot of that has been HLHS-related. I do realize that I have a tendency to go on in excessive detail about things here, so I will try to sum everything up as concisely as possible!
First of all, I finally did get to talk to Surgeon #1 yesterday, and he spoke to me for a long time. It turns out that he actually developed the Hybrid procedure, which I didn't know, and while he couldn't really give me a lot of data on outcomes of the procedure, because it doesn't really exist yet, he made some pretty strong points about why the Hybrid might be better than the Norwood.
I don't want to get bogged down in discussing all the details, but will just say that at this point, the biggest question mark in my mind about the Hybrid vs. Norwood issue is the stage 2 surgery. With a Hybrid, you have a much less invasive and less dangerous first surgery, and a more invasive and more dangerous second surgery. The idea is that by the time of the second surgery, the baby is stronger and more resilient, but it is a challenging procedure for the surgeon, so I think I want to try to meet with Dr. Azakie again and talk to him some more about it.
To be honest, one of the scary things about going the Hybrid route is that if the baby does die, I think it would be easier on us for him to die around the time of the first surgery rather than around the time of the second surgery. Obviously, either scenario would be devastating for us, but I think it would be a lot harder to lose him after we've already integrated him into our lives. So, I have to say, that is a consideration for me. But only one of many.
This morning we had an appointment with the head of Pediatric Cardiac Catheterization, who would be intimately involved in the Hybrid procedure if we were to go that route. One of the things that's kind of funny about our situation right now is that at the moment, technically I am the cardiac patient. So I had to fill out a form about the medications I take, and they had to measure my height and weight before we met with the doctor, even though we were just meeting with him to talk! The apppointment was not that eventful...basically I asked him a bunch of questions about the Hybrid, but nothing he said really made the decision any more clear, which I suppose is only appropriate since a clear answer doesn't really exist at this point.
After the doctor's appointment, we met up with Jeni, who at 24 is one of the oldest HLHS survivors and one of the first babies to undergo the Norwood surgery, and her husband Nick. They live down in Southern California, but were up visiting relatives in the Bay Area and generously took time to come and meet up with us. Jeni seems to be doing very well, although she told us that she has some limitations in her life stemming from lower-than-average energy levels which make it tough for her to find a job. And of course, like anyone in her situation would, she said that she worries about what her future holds health-wise. Oh, and perhaps most frightening of all, she told us that she doesn't have health insurance. I haven't written anything here about the current health care debate because I don't think this is really the place for that, but needless to say, I am watching events very closely, having both a husband and a son who are "uninsurable" under the current system. Anyway, Iggy and I had a good time meeting them, and really appreciate the fact that they took the time to come hang out with us!
You might have noticed that I didn't mention much about work today...that's because I pretty much got none done. But never fear, I'm going to be in the lab all day tomorrow. Someday I'll be all caught up on everything! Or so I tell myself.
7 months ago