Ruby Hope McKee Starling

Ruby had a busy weekend!  My cousin Malissa came down to visit from NYC:

Ruby is doing OK, but still hasn't peed off all the fluid she needs to before they can take her off ECMO.  She's getting close, and they started a new diuretic (bumex) today, after deciding that the other new one didn't work.  She's nowhere near as swollen as she used to be, but they'd like her to be as good as possible before taking the next big steps.  But those steps may be delayed...

The big bad news of the day is that one of her blood cultures came back positive for an infection.  They routinely take cultures from the umbilical and ECMO lines in her to make sure they're not getting infected.  The ECMO culture from 48 hours ago grew some gram positive rod bacteria.  Ruby's Grandma, who works in the lab at a hospital, said that it is most likely that the specimin got contaminated due to mishandling and that most of the scary things like staph are not rod bacteria.  More cultures were taken today and we'll see if they grow anything overnight.  Sepsis is the last thing that Ruby needs right now.  They've been worried about it for a few days, since her retaining this last bit of fluid could indicate an infection.  So she's been on super-strong antibiotics for about 5 days now, so it seems unlikely.  And if the latest cultures do come back positive again, she's already on the medication to cure it.  We're just afraid that if it isn't a contaminated specimin and she really does have sepsis, it would push back the timeline to get her off ECMO.  She is NOT running a fever -- I personally checked it today and it was 36.9C (98.4F).  So I'm inclined to think it's just a false alarm, but we're still very, very worried. 

Basically, though, we'll know more in the morning.  They should know if the 2nd round of cultures have grown anything overnight and they should be able to identify exactly which bacteria that is in the positive culture from 2 days ago.  Based on this and how much she's able to pee tonight (they re-installed her catheter), and the results of the echocardiogram that's scheduled for tomorrow, they will hopefully be able to put together more of a game plan for getting Ruby off ECMO and having her surgery to repair her diaphragm.  We'll certainly update when we know more.

Over the weekend, Ruby has become Little Miss Grabby.  She grabs at everything around her and gets in trouble for grabbing the ECMO cannulae ( tubes on the right side of her neck that carry blood in and out of her body to the ECMO machine) and for grabbing the NeoBar (the blue bar taped to her face that anchors tubes that go into her lungs and stomach).  We usually keep the canulae hidden with a blanket, but today she was quite interested in attacking her NeoBar.  At one point, I caught her with her fingernails underneath the tape and she was literally picking at it, trying to tear it off.  So instead I offered her my finger, which she was content to squeeze while kicking her feet in the air for about an hour straight.  Here's the little trouble maker in action: