Another big day in Lillian's recovery! Lillian got her arterial line out today, so she finally has her hands back, a proposition that she is thrilled with. It's hard being an 8 month old who has recently figured out how to grab things and stuff them in her mouth. With the art line out, she can do that again, as you can see above. That line being out has done wonders to improve her mood, and she's pretty much back to her former self.
|Lillian's arm just after having the arterial line removed.|
In a desire to prevent the brains of my non medical-personnel readership from melting, lets change gears a bit. Lillian got discharged from the CICU today! It was fairly obvious that she didn't belong in the ICU when she was doing things like in the picture above - sitting up, laughing and playing like she normally does. She's shown for quite some time that she doesn't belong there, and now that we think we have her heart rhythm issues figured out, it was time to go to the floor.
|Just about ready to leave the CICU (I know you can't see Lillian, blame the bed)|
Since Ganciclovir is the only medicine that requires the PICC line, the line is currently heplocked (medical jargon for a inactive line kept open with the blood thinner Heparin). This means Lillian can wear pants again! Well, maybe not everything as the line is still there, but we can certainly do shorts and more pants like things. We will probably pull the PICC line before final discharge, but for now we need it for the Ganciclovir, but only once every 12 hours.
It is good returning to the floor again.When we first returned to the hospital for the heart failure, the CICU felt like our home, but after five months on the floor, that has all the vestiges of normality right now. It also lets us do things like sit Lillian down on a mat on the floor and play with her. Of course, the CICU still feels like family as they were only ones who cared for Lillian in the first parts of her life and in the worst parts, but the floor does have a different atmosphere. I guess in the middle of a late paragraph would be a good place to bury my thanks to the CICU staff specifically, but thanks guys and gals, you're all awesome and have helped us through an extremely trying time; caring not just for Lillian but for us as well. We owe you an incredible debt of gratitude that we will probably never be able to sufficiently repay. I just hope I never see you again unless you're visiting Lillian on the floor (which we do love and you're more than welcome to do; just walk down the hallway and you'll spot us) This time on the floor is actually easier than it was than our last time on the floor as our room is even bigger now (bigger room > better view), and Lillian is on no IV pumps at all because of the line being hep-locked. The last time she was on no IV pumps was when it looked like the Milrinone wean would work (we all know how that ended...), so this is another big milestone. It makes it so much easier to do things with her, and we won't have to drag an IV pole around with us when we go on walks in the future.
|Springtime at Children's... and Seattle|
(aren't you all amazed at how much I can write about a single day? Just wait til there's not much to post about Lillian and I start going through her historical list of medicines (it's loooooong) and start describing how they all work)