Community of Heroes

Cora got another new pair of slippers, if you can believe it.

By the way, it's hard to concentrate on writing at the moment because Cosette is currently trying to fall asleep, singing Katy Perry's "Firework." Her version -- "boom, boom, boom / even hotter than the moon, moon, moon." She cracks me up.

Anyway, Cora's surgery has been scheduled for Thursday. Apparently it is somewhat involved to coordinate the two teams -- cardiology and EP -- hence the wait. It's fine with me though. I'm still feeling good that we have a diagnostic plan.

Since Cora's broviac had to be pulled due to the line infection, she hasn't had a stable line and has been relying on IVs. She lost the last one last night and they weren't able to get a replacement, so she is off her IV lipids for the time being. We are hopeful that she can gain weight without them (just on her enteral feeds), but it's something that her team will watch carefully. If it turns out that she does need the lipids in order to consistently gain weight then we will need to make a plan for getting another line again. We'll see about that.

Another thing her doctors are watching is the amount of diuretics she requires to keep fluid off her lungs. Right now she's on three separate drugs several times per day. Over the next few days her team will wean some of the doses to see if she can come down a bit in her support requirements. It's somewhat undesirable to be on such high doses, mostly due to the risk of becoming dehydrated and wacking out your blood chemistry. That partial weaning process will begin tomorrow.

On my very first blog post I wrote about the community of heroes and of how we all need each other. That's what's on my mind tonight as I write this. For the past couple of days my dear friend from college has been visiting. Today her mom sat with Cora so that we could be together with Dom and Cosie and her two children. Then another friend came to relieve her of Cora duty, and two more friends are there with her now while I stay with the kids at the RMH. Tomorrow will be similar: six people will take shifts being with Cora since Jay is gone for a couple of days, and because it's hard for me to do more than stop on when I have the other kids. And Sunday when I leave for Disneyland and before Jay gets back, the same. I just can't believe how many people step forward at the smallest request. How many people have shown up for us, and who love Cora and our family through thick and thin. I used to think we would burn people out if this ordeal lasted more than a couple of days, but ironically, the longer it continues, the more people there are showing up. The more love we feel.

One of my favorite writers, Paulo Coelho, says, "Love is much like a dam: if you allow a tiny crack to form through which only a trickle of water can pass, that trickle will quickly bring down the whole structure, and soon no one will be able to control the force of the current."

I truly believe we are living in a flash flood with a community of heroes.

If you have called us, or emailed us, or texted us, or prayed for us, or thought of us, or sent us a card, or visited us, or if you're even so much as reading this, you are by de facto part of the water, and you're helping us get along.

Thank you, to say the least.