Some reflections as we prepare for home

This morning on rounds the team reviewed plans for the next few days, then there was much talk about Cora's discharge. We discussed follow-up appointments that need to be made and logistics that need to be orchestrated. But there was also a discussion about just how remarkable it is that Cora is ready for home.

Rounds are usually a very serious and academic thing, which is why it was so touching to me to have the team of fifteen or so individuals, who we've come to know so well, spend time marveling at the progress Cora has made. They discussed her most recent echo which shows near normal heart function. Everyone just shook their heads in amazement.


I want to tell you about some things that happened before I started writing this blog. Back in December, we were discharged following Cora's first open heart surgery, which was to repair her coarctation of the aorta and a large hole in her heart. She had struggled following the surgery and we had some very tenuous weeks in the ICU as she made her way back to health. Eventually we were sent home and we expected Cora to get better. But instead, she got worse with each day that passed. We went in and out of the hospital not knowing what was wrong, knowing in our hearts she was not well.

On December 28th I took Cora to Marin General one more time. Her breathing was so labored it was almost as though she was doing crunches with each inhale. Over the two days prior we had watched her turn blue at least half a dozen times. We were at our wits end. Upon taking one look at her, the attending pediatrician at Marin General took one look at her and called for a transport unit back to UCSF. He could see that she was very sick.

I'll never forget that transport ride. I sat in the back with Cora who lay there in the enclosed isolette, and there was an ominous feeling all around us. I felt very much that this was going to be the beginning of a long journey. Thank god I didn't know then how right I was.

For the next few days Cora struggled, and was almost immediately transferred to the PICU. We consulted with various medical teams who all weighed in on what her issues could be. The cardiologists insisted her problems were not heart-related, because her coarctation and VSD had been successfully repaired, and because echos showed normal heart function before her discharge in early December. But eventually one very persistent doctor persuaded the cardiologists to take another look.

And the rest is basically history.

That echo on January 2nd showed heart function that was not sufficient to sustain her little body. The next day we almost lost Cora and we watched, helpless, at her bedside as a team emergently intubated and stabilized her in front of us. A week later a biopsy of the heart indicated dilated cardiomyopathy. We were told that there was very little hope.

I remember that night of the intubation as it settled in that it was very possible we were going to lose our little girl. There are no words to describe being on the receiving end of those discussions. Over the next four months, we witnessed more emergencies, we were given worse odds, we provided advance directives, and we discussed things like withdrawing support, and palliative care. As you know, we have been through periods that have been very, very dark, though none worse than when nearly three weeks ago, we stood by as the team worked to resuscitate our daughter, who was, for a short time, gone.

I'm writing this now, because I want it to be part of the official record that Cora wasn't ever supposed to get better and go home. Of all the scenarios we were presented, everything before and including heart transplant, Cora getting better and going home was not among the probable outcomes.

But yet here we are. And I am busy preparing things, and she is very much coming home.

One of our most favorite doctors told me when we returned from Stanford and he reviewed her echocardiogram, "it's as though she got a transplant, but it was her own heart that she received." Because to these doctors, her heart only barely resembles the heart of that child who came back to UCSF, so sick, on December 28th.

As we were all fretting and as my heart was breaking, Cora was quietly walking her life's path, which, clearly, was to get better and to be here. I am so very grateful that I will have the opportunity to do some of the things that flashed before me back in the PICU -- to go for walks, to take a hike, to go to the zoo. All the things Cora had never experienced. The things I feared she never would. We don't have any guarantees, but we now have a chance at things that I would have given anything for.

So on rounds this morning, the team appropriately took a minute to marvel at just how astounding it is that now, on May 15th, we are planning for discharge. One surgeon said, "I don't know how to explain it. When I looked at her echo today, I really could not believe it."

To which I replied, "What can I say? She's magic." And they all agreed.