Day 10

Several pieces of good news this morning.

Sam's chest x-ray showed improvement, which suggests that the treatment is having an affect on the HLH (and fluid?) in his lungs. That's good for a few reasons.

With less crap in his lungs, the team has decided that it's now safe to start feeding him breast milk again (via a tube in his nose). The milk replaces a nutritional supplement (whose name I forget) that was going in via IV. I'm not sure how it all pieces together, but the fact that Sam is on a ventilator meant that they were reluctant to put fluid into his tummy that he might aspirate. He's still on the ventilator, but somehow the risk of aspiration is reduced.

Anyway, it feels good to know that Sam is again getting the best food out there, one that includes important antibodies from Alyson. It's also nice to know that he won't feel hungry anymore.

The x-ray result means Sam is also on a path to be removed from the ventilator--maybe in the next couple of days? And that means that he would not need to be sedated anymore, could again be held and breastfed. We are dying to hold him, look into his eyes, and know that he's looking back.

Finally, with less fluid in his lungs, they have started (or will soon start) to wean Sam from the diuretic they've been giving him to help him excrete all the fluids he's been getting. It's nice to have him getting one less med, and nice also to think that his kidneys will get a break. The more we can spend the next couple of months just dealing with the HLH, the better.