99 bottles of milk on the wall

That’s the song I’ve been singing to Sebastien and Samuel. They seem to like it. It started because I kept forgetting or mangling lyrics to various nursery lullabies. I first started singing it to Sebastien during k-care. They don’t care about the lyrics, just the voice, rhythm, etc. And singing this can go on and on. With Samuel we can see his sats go up, he definitely relaxes when we sing.

Poor Samuel, he just can’t catch a break. His blood numbers are starting to get better, but he’s still far from better. He’s less swollen, but he’s still churning through platelets, his blood pressure is still low, blah blah blah. Today his current PICC line shifted, which meant he needed another one immediately since they’re constantly pumping him full of products: blood, platelets, dopamine, omegaven, tpn, the list goes on. So they tried to insert it into his leg: the line got blocked. They tried again in his scalp — the line went into his neck. At this point, I was an hour into k-care with Sebastien. The nurse finds me, tells me they’re going to try again.

They try his arm, no go. They try another vein in his scalp, no go. But they left all the needles in basically, 3 new IVs. He’s got something in every extremity and now his head.

Tomorrow he’s getting his first surgery: they’re surgically inserting a central line into him, one that will allow them to put in a lot more products (since right now they can’t mix the dopamine, omegaven, etc with other fluids). We’re nervous of course because it will require anesthesia, but hopeful it’ll work. Having this central line means he’ll get poked a lot less often.

The infectious disease doctors are now also involved in Sam’s care, trying to figure out what’s made him sick.

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