information maze

If all goes as anticipated, Kai will be coming out of surgery in exactly a week from now. The information and images from yesterday's hospital visit are sinking in and causing some turbulence at night. I am still grappling with the sight of crowded rooms and the realization that we might not be able to spend the nights with Kai. The hospital is simply too full right now and next week looks the same. All we can do is hope that this doesn't too negatively impact the quality of care. It seems like things could so easily fall through the cracks.

It has been quite unnerving navigating through the discrepancies of information. Initially, back in March, we were told that Kai would spend 24-72 hours in Intensive Care and then 3-10 days in the General Care area with the possibility of another child in the room. Now they are talking about 1 night in the ICU, 3 days in General Care and then he'll be discharged on Saturday, four days after surgery. I'm wondering if they're rushing people through because it's so busy. The recovery time has somehow also shrunken. In the beginning, we were told that the healing period at home is 4-6 weeks. Now they're talking about going home on tylenol and being back to normal in a maximum of 2 weeks. I guess we'll see.

I've gotten different messages about whether we can stay with Kai until he is unconscious. Some people have said parents can't be there when the anesthetic is administered, others have said it depends on the anesthesiologist. One gruff nurse did not mince her words: "In any case, you don't want to be there. You don't want to see your child's eyeballs roll upwards and them flailing their arms and legs around before going under." Thanks for that information?

The most puzzling and frustrating discrepancy: the cardiologist says an MRI might still be necessary to get a fuller view of the coarctation than the echo has been able to provide. The surgeon, whom we ultimately trust and defer to, says that this is not necessary at all. He scored a big point with Chris when he used a rock climber's term to explain his perspective: "From a surgical standpoint, the CRUX is what the aortic arch just upstream from the coarctation looks like. The MRI will not give me more information than looking at the coarctation with my own eyes. It will not change how I approach the operation, so no need to get a test that I won't use." It still seems that there is merit to the cardiologist's argument, as the length of the coarctation determines whether the surgeon can just sew the ends of the aorta together or whether he has to insert some kind of connecting material. Wouldn't this prolong the operation and thereby impact the amount of anesthesia needed and the length of time the blood flow to the spinal cord is suspended? These are the kind of questions that can keep me up at night.

Chris' approach is probably the healthier one: don't ask too many questions, just trust the experts, they know what they're doing. I'm just not wired that way. I need to communicate (thus the blog) and vacillate between cautious optimism and skepticism. The New York Times had an interesting article on optimism the other day: "Recently, with the development of non-invasive brain imaging techniques, we have gathered evidence that suggests our brains are hard-wired to be unrealistically optimistic. When we learn what the future may hold, our neurons efficiently encode unexpectedly good information, but fail to incorporate information that is unexpectedly bad." Well, yes, but this is a necessary life (and sanity) preserving adaptation to existence. Optimism is part of the art of living and a key ingredient of resilience.