Medicine

I am at home tonight with Dominic and Cosette and Jason is with Cora, who is currently fast asleep. It was just a so-so day for Cora today. She has been very lethargic and is still struggling with her breathing. She gave us a decent scare earlier this the afternoon when she was difficult to rouse and it seemed like she wasn't profusing well. At the time her heart block was acting up in a semi-dramatic way, and the combination of everything was enough to warrant the doctors ordering a battery of tests.

I'd gone home to pick up the kids and luckily my sister, Amy, was hanging with Cora until Jason arrived. Everything seems to be okay-ish for the time being but it was another reminder to me that Cora isn't out of the woods yet. I think she is just going to have these backs and forths, and our job is just to watch her, advocate for her, and continue the business of trying to get to the bottom of all this as more is revealed.

I used to think that medicine was pretty straightforward. You don't feel well, you went to the doctor, they told you what's wrong and that's that. I believed they could always tell you what to expect, what the course would look like, and even if they may not always be able to heal you, they could at least speak in definitives.

I've found that to be so far from the case. There are very few absolute points. There isn't a blood test that says, "oh -- 18...that means you will never recover and need a transplant," or "22...that means you'll be fine in three months." Everything we've encountered, perhaps with the exception of the original coarctation and VSD repair, has been subject to differing opinions. The courses to take have been very unclear. Cora's heart failure, her heart block, and all of her myriad other issues, are very much gray areas on which few people, all very well trained and very brilliant doctors, agree. I'm not sure we will ever understand very much of it, but my hope is that with each day that passes, Cora will give more clues as to what she needs. And also that we will continue to find the intuition to lead her down the right courses.

I spoke with Cosette and Cora's very wonderful cardiologist from UCSF today and told him I was having trouble keeping up with and understanding all the various issues and the turns her illness has taken, and he laughed and said, "you're not alone!"

But that brings me to some of the very wonderful things about medicine that I didn't know before this. I didn't know there were nurses who I would feel like I'd known for years after spending one 12-hour shift with them. I didn't know those nurses would text me and email me and send me cards in the mail, but they have. I didn't know that some doctors would give me their cell phone numbers even after they were no longer treating Cora, but they have. I didn't know that those doctors would answer their phones on the nights and weekends, but they  have, or that they would never seem to tire of our endless questions and updates, but so far they haven't. I didn't know that they would spend parts of their day discussing my daughter, not because they were treating her, but because they cared about her. They really have.

For all the many medical professionals we've met who have been incredibly brilliant and very renowned, the ones who I'll always remember are the ones who have really cared, not just for Cora, but about Cora. There have been many. I don't know anything about medical school, but I hope there is an entire year devoted to teaching people to really listen; that spending twenty minutes sitting down with a family can be much more important than just about anything else.

Tomorrow there will be more tests, and very likely, few answers. Such is the difficult and frustrating road we're on. But still, I feel optimistic. Like so many of you, I deeply believe in Cora and I know she will make her way.