Thursday, March 31, 2011

Returning to Normalcy - Back to the Floor

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 other news, we learned today that Lillian's new heart is CMV positive. CMV stands for Cytomegalovirus, a virus found in anywhere between 50% to 80% of the American population (less elsewhere) and is generally benign. Most people infected with it don't even know that they have it, as the symptoms of it's infection are basically a sore throat or fever). However, CMV does present significant risk to those who are immunosuppressed like Lillian is. Since Lillian was, and still is CMV negative, we are giving her an anti-viral called Ganciclovir (pronounced gan-sci-clo-veer, brand name Cytovene (indulge me for a sec as I geek out about medical technology and medicine - Ganciclovir works by preventing the viral DNA from incorporating deoxyguanosine triphosphate, otherwise known as dGTP, a major building block of DNA strands. This prevents its DNA chain from getting longer, and (I assume) replicating any further.)), an IV only medicine which will hopefully either help prevent the virus from passing to the rest of Lillian's body or will make Lillian switch to CMV positive with relatively little incidence. If she switches to CMV positive without any major issues, the virus will remain in her T-Cells for the rest of her life (as it does for all who have it) but poses little risk. However, we need to continue the treatment with Ganciclovir as well as doing regular serological evaluations (i.e., blood work to determine if she has antibodies for CMV) to help ensure that any possible passing of the CMV virus is benign.

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)
She does still have the pacer wires in still just in case, but we don't think we'll need to use them again. In terms of her heart's electrophysiology, we are seeing normal P waves from her donor's sinoatrial node, as well as an occasional extra tossed in by her old SA node. In English, this means we're seeing normal rhythm again, although we do see some occasional blips here and there. However, these blips don't seem to appear to interfere with her blood pressure or her oxygen saturations, so they don't appear to be an issue for now. My guess is that they will either disappear with time or she won't even notice them, although I admit to not knowing much about her long term prognosis in that area.

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
Again, I find a picture of spring on the walk out of the hospital appropriate here. The dark clouds are passing, the sun is shining and Lillian's new life is starting to bloom. We have returned to what is a normal routine for us, but we will soon have the chance to bring Lillian somewhere foreign and alien... home. Plus, jazz hands have returned with a vengeance now.

(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)


  1. Dear Andrew and Kathryn, what a precious baby girl! I am praying for Lillian's heart and life to thrive! May the Lord give your family strength and peace in the days ahead. Love, Ms. B (aka "Teach" --- back in Andrew's middle school days). Blessings on your family!

  2. I love reading your updates. Lillian is doing amazing and I get a lesson in medicine. You understand so much more than I ever did when Hope was in the hospital. I am continuing to pray for Lillian and your whole family. I am still waiting for the 'we're going home' post!