Today was a better day, for us and for Lucy. She started the day with much higher CO2 levels than she’d been having (70), so they decided to give her a few hours and try again. In the meantime, Dr. P thought her ET tube might have gotten some secretion buildup, so he decided to switch it out for a new one. Lucy tolerated being re-intubated well, but the tube was clear, so that wasn’t the problem. When they tested again, her levels were still high (63), so he turned her breath rate back up to 36. By the way, when I say breath rate, that’s the number of breaths the ventilator breathes per minute, but she can take as many breaths as she wants above that number. And when I say she was “riding the vent,” I mean that she wasn’t initiating breaths above that rate, and was allowing the machine to do all her breathing for her. That’s pretty common for now. Anyway, he turned her breath rate up to 36 from 33, which is kind of disappointing. While her overall pressure remained at 21 (that’s PEEP plus PC above PEEP, if you recall), he switched PEEP from 6 to 5 and PC above PEEP from 15 to 16. I’m not sure why he turned one up and one down. I know PEEP is the pressure that remains in your lungs after you’ve exhaled to keep the alveoli from collapsing, and that 5 is the pressure we all have, so that seems like a step in the right direction. But PC above PEEP is the pressure the ventilator is using to inflate her lungs, so increasing it seems like a step in the wrong direction. I’ll have to try to find out more. She had another blood gas test at 9:00 tonight to check her progress with the new settings, and her CO2 was 36, which is really good. The child can’t make up her mind.
Her platelets were back down to 19 today – very disappointing. I know we won’t be able to completely get a handle on the platelet situation until the yeast infection is cleared, but it’s still a bummer every time I see them go down. If they’ve gone down much more tomorrow, she’ll probably need another transfusion. As it is, her hematocrit was low, so today she got a red blood cell transfusion, and she’ll have another tomorrow. The only thing of note about the blood transfusion is that she received it through her PICC line. That isn’t usually done – it’s usually given through a peripheral IV instead of the central line – because blood can clot the line. In this case, though, they were burning through peripheral IV sites, and Dr. P decided that they need to preserve those sites for when they remove the PICC line. Otherwise they’ll have no way to administer antibiotics, TPN, antifungal, and transfusions once the PICC line is gone. Poor Lucy has a bruise on the back of one of her hands from repeated stab attempts. Again, I blame low platelets for that.
On the positive side, she didn’t seem to be having nearly as much trouble today. She now weighs 1260 grams, or 2 lbs. 11.5 oz. I got to hold her doing kangaroo care for an hour today, the longest I’ve ever been able to hold her. It was so wonderful. She fell right asleep again, but every once in a while she would turn her mouth to my chest and open and close it, then she’d fall back asleep. She was drooling on me, too, and I suspect it won’t be the last time she does that. She tolerated the whole experience really well, except for a brief desat when her tube got pulled out a little. I love that little girl so incredibly much. Hopefully next time I’ll be strong enough to insist that daddy hold her first so he gets a chance.
Lucy cuddling with mama:
Back in bed, all tuckered out. Look at the size of that diaper! She’s outgrown the smaller size, so she finally moved up, but it’s huge on her. (The first diaper was a Pampers size Preemie XS, this is just a Preemie S, haha.)
Close up! She was so peacefully sucking her pacifier. Her skin often looks flaky like that – it flakes right off during baths. Don’t worry, it’s normal.
Waking up a little bit. Look at that hair! You can’t see it here, but it definitely looks like she has blue eyes. Whether they stay that way remains to be seen.
Waking up even more. She’s saying “Mom! Stop taking so many pictures!”
Now she’s just getting fed up:
“Alright Mom, I’ve had it. Enough is enough!”
Thus ends today’s episode of the Lucy show. The other Lucy show, anyway.