1) Photo: a couple of people have commented on Sam's photo from the last entry, and I realized I forgot to give proper credit. A photographer named Angie Taylor, a friend of my sister-in-law, photographed Sam a few weeks ago. She took a number of beautiful photos and kindly sent several to us via email. Her work is what you are admiring.
2) Blog comments: in my day-to-day world (it's Jason), I'm not known to be the most emotionally demonstrative person in the world. In fact, a friend of mine recently said, "Dude, you don't even like to answer the phone; how can you make your blog so public?" Good point. Maybe I (we!) need the support in ways I hadn't expected. That said, Kristin and I love reading the thoughtful comments that so many of you leave. On days like today, they make a difference when we need to marshal our strength.
Last night, to calm Sam down from his middle-of-the-night desat, echo, and x-ray, I sang him a song. The only one I could think of was Simon and Garfunkel's "The Boxer." In light of the last 24 hours, the last stanza seems as prescient as ever:
In the clearing stands a boxer
and a fighter by his trade
and he carries the reminders
of ev'ry glove that laid him down
or cut him till he cried out
in his anger and his shame,
"I am leaving, I am leaving"
but the fighter still remains.
It's the last line that does it to me. In spite of all the trauma, so bad that you not only want to submit, you actually say you are done...and yet, you don't concede. That's the part that I love. You still remain. Wolfie will be fighting a new battle for the next several weeks.
This morning, we woke up to the surgeon in our room (never a good sign). We learned that there would be no MRI or CAT scan today because of risks to Sam's health. Overnight, his blood cultures grew. This means that the something in his heart is at least partially made up of infectious bacteria from the strep family. He started a new antibiotics regimen today and will do so for approximately 6 weeks. Two hurdles exist:
1) He needs semi-permanent IV access. This was accomplished today when cardiac anesthesiology placed a PICC line. We will spend at least tonight in the CICU to make sure the procedure has no complications.
2) The second hurdle is more dangerous. The goal is for the antibiotics to slowly dissolve/melt/erode the mass. Pick a word that works for you. The problem is that there is no way to control how this process occurs. Picture an ice cube on a sidewalk. If the ice cube slowly melts, you almost don't know it. Water pools and evaporates away from a central core, absorbing into the air with not much leftover at the original site. That would be ideal. Of course, sometimes the cube melts in some kind of fault line and a chunk will fall off from the original to be absorbed separately. If this happens, the chunk will go...somewhere. If such a chunk goes out his new aortic arch, it could find its way into his brain and cause serious problems. If such a chunk goes into his shunt, it could clog the whole works and cut off blood supply to his lungs...
The short version is this: the only viable way to treat this problem is with antibiotics. Which may work. But they may not. Or they may work in a way that causes more harm. Surgery could correct it, but due to risk level they will not schedule any before the natural progression of the planned Glenn surgery. If he can hang on until then, a surgical repair may be possible. We're just hoping that (for once!) he follows the rules, and his body allows the antibiotics to work as they are supposed to, to dissolve the glue holding the mass together and letting the rest melt into thin air.
Sigh...more long nights and no sign of going home again. We've been told anywhere from 3 days to 6 weeks. Will post again when we know something new. In the meantime, I can hear our little boxer grumbling post-diaper-change. Good night all. And CT, sorry I missed you. I was really looking forward to seeing you; it would have been nice to come back today. Soon maybe...