Day 55: progress!

Today was another good day, and more progress was made! Lily was switched to the conventional ventilator today around noon, and she is doing well on around 30% oxygen. She is even "breathing over it" a bit - meaning her breaths exceed the ventilator breaths - the oscillating ventilator wouldn't allow her to do that. So this weeks goal is now to get her off the ventilator, back on SiPAP and breathing on her own - with just a bit of air pressure for help, instead of full-blown ventilation. It's nice to hear docs talking about extubation! I'm hoping for sometime this week. It will be GREAT to get that tube out... she'll be a lot more comfortable, and her lungs can start to heal more without mechanical ventilation.

On the gastro front, Lily is now on 25ml bolus feeds, just 5ml short of a "full feed" for her size. Getting to full feeds today is particularly good, because it means they can stop the electrolytes tonight... which in turn means they can take the IV port out of her head and she won't need to be stuck for another IV tomorrow! They are starting lily on a new diuretic tonight, one administered through her feeding tube. I need to catch up with the docs on why we're stopping lasix, but it may have something to do with the potential risks, one of which is hearing loss.

I got to hold lily tonight! The first time she could be held in 10 days, and it was great. Lots of tubes, but I didn't notice them... just our little warrior. Still the strongest kid I know! The amount of work her little body has to do is astonishing. It seems more than any adult body could survive. She really has the strength of thousands. And even though it sometimes feels like we're walking through a mine field, Lily's strength keeps us going!