Good night, good morning!

Coley had a good night last night and it has been a good morning so far. Ted stayed here in the ICU with him and I stayed next door at the Children's hotel with Hylah. Ted's parents stayed at our house to care for Penny and the garden.

Coley's bed, machines, and Nemo balloon

The greatest news is that he's breathing on his own now, no longer on the ventilator. That's one set of uncomfortable tubes gone. We're so grateful for the slow progress. He's also not on major pain meds or sedatives anymore, so he'll be slowly waking up this morning. We've got a nice Nemo balloon at the foot of his bed to distract him when he does wake (see the photo from behind). He's been stirring a bit and trying to grab at the oxygen cannula in his nose, but not fully waking. I'm so glad he's sleeping. He's going to be pretty unhappy when he does wake. But as he wakes, he may get more morphine to keep him calm, and the nurses will start taking out more of the annoying tubes and lines.

The most uncomfortable part of all the equipment is the chest drainage tubes, which are inserted into the pleural space around the lungs. Fluid buildup there is one of the most common complications after heart surgery. Those drainage tubes will have to remain in for a couple more days. They're not draining too much fluid anymore, though, which is a good sign and it means they'll be out sooner than later. He's also part of a study testing one of two drugs (or a placebo) that may increase pleural drainage and help him recover faster. We're hoping he's on one of the drugs and that it's working!

If you're curious about the guy who was inside Coley's heart (amazing!), check out the video on the homepage of Children's Hospital. His name is Dr. Pedro del Nido. He is truly a miracle worker and someone to whom we will forever remain indebted.

We'll post more updates as things progress. Thanks for staying tuned. Every time I think of all of you wonderful people out there reading about Coley, I get teary. Thank you for all your love - we genuinely couldn't manage all of this without you.