A Heavy Heart

Cora trudged along today, more or less about the same. They decided to extubate her tonight, mostly because she was exerting so much energy being furious about having the breathing tube in, that she wasn't benefitting from the rest that being ventilated normally provides. She was in a cycle of requiring a tremendous amount of sedatives to keep calm, and meanwhile becoming more and more agitated every time she woke up a little, thus requiring even more sedatives. So they decided to see if she can tolerate being off of the ventilator and back on hi flow oxygen again.

As of tonight she is tugging hard and struggling, but she's getting through for the moment. Hopefully she will acclimate and improve over night and into tomorrow.

We learned tonight that the cultures taken last week came back positive for a respiratory virus. This explains why her white cell count was so high and why she had a fever in the days following surgery. Given that she has been on the mega antibiotics for the last three days, there isn't any new action to take, but her doctors are gratified knowing there might be a reasonable explanation for her respiratory distress. They will continue to watch her lungs closely with daily chest x-rays, and she'll go on getting lots of breathing treatments and suctioning until it clears.

We also learned by way of an echocardiogram today that Cora's heart function has meaningfully worsened. This refers to the actual squeeze of the heart, the metric that was poor enough to necessitate her being on the transplant list as of a month or so ago. As you can imagine, we are "sensitive" to her function diminishing. It could be explained by a number of reasons, again one of which could be the trauma of the last week or so, but regardless of the reason she was started on two new medications today in hopes that her function will improve.

But the hardest part of today was watching a family next door to Cora say goodbye to their child, for no good or particular reason except that to him and to them, life was not fair.

If you're reading this tonight, I hope you'll not only pray for Cora, but for all the other children and all the other stories being lived out there tonight.

I don't know what the next few days hold. To ever think I do is laughable. This afternoon and evening I started to drift into the land of the big unanswerable questions, and the fear of how long this might go on, and how many difficulties may still lie ahead. I know that's unproductive territory. It's so hard to relax with what's going on. My foot is constantly bouncing, my mind is constantly going, and as usual, the only thing I can do is believe in Cora and in everyone taking care of her.

I've written it before, but I just keep coming back to it. The only possible way to walk through this life, whether your child is in an ICU or whether you've never lived a catastrophe, is to be in the moment. You can hope for the future, but you've got to love what you've got, right now. Things change; the unfair happens. But it's amazing to line up the procession of "now's" I've walked through, and to admire how beautifully life goes on.