Sunday, September 19, 2010


Zoe is up to some tricks. First, getting her days and nights all mixed up. Great, just in time for our return home. Thanks CHOP nurses...they take her out of her room at night and let her "socialize." She's a "social butterfly and smiles all night from midnight to 2 a.m." That's all fine and dandy, but I'm certain I won't see any CHOP nurses at my house at 2 a.m. next week helping me out any. Zoe and her friend, Curtis hang out and smile and keep the nurses company. I wonder if Curtis' parents know about the party they hold each night at the nurses’ station. Perhaps I should warn them tomorrow.

Today, Zoe played some games with her oxygen levels. Just when we think she's ready to be weaned completely, she'll dip down again. Perhaps she is a party animal and doesn't want to leave. She'll miss Curtis too much. (Curtis is definitely a cutie-pie, just ask anyone who's been at CHOP in the last 5 months; he's quite famous.) I overheard the nurses saying, "Oh Curtis is back!" The other retorted, "Oh really, how is his hair?" I'll have to see if I can get a picture of them together, then you'll see...

After bathing Zoe this evening, I noticed a knot/some swelling underneath the skin at the incision site. Before I get all freaky, we're going to have the cardiothoracic surgical team check it out at 5 a.m. on Monday when they arrive. Please pray that it is not an infection; we really, really want to go home on Tuesday. (Update: the surgical team is not concerned about the knot and believes it is from the sutures or muscle overlay. Of course, our instructions are to "keep an eye on it.")

I'm missing Emmy something awful. My parents took her to our house today. She got to the door, peeked in the window and said, "Zoe? Mum?" Makes me want to jump on the next flight outta here.

So, if everything goes as planned, we're headed back West late Tuesday afternoon.

And, in case you were wondering, Zoe is as cute as ever!

We'll keep you posted to our goings-on.

The Lihns


  1. Praying your little party animal is not brewing an infection in her incision.

  2. Would love to see a picture of Zoe and Curtis :) Glad Zoe is making the best of her time at CHOP! Sad to see her incision :( What a trooper!

  3. She is SO beautiful!!! And don't worry, if Zoe is anything like Bodie, her sleeping patterns will be all amuck anyway after coming home - no fun, I tell ya! Bodie did the same thing with his oxygen right before discharge. He still periodically desats into the high 60's, but since he bounces out of it on his own pretty quickly, they were ok sending us home like that, especially since we have a pulse ox at home. Also, don't know if anyone told you, but apparently, after the Glenn, it takes 2-3 weeks for everything to settle and the sats to get to where they're going to be. They told me to expect Bodie's sats to climb for the first couple of weeks at home and then likely settle somewhere in the mid-80's. Something about the Glenn physiology. Gave me some comfort!

  4. She's adorable!! I love that she's a party animal...but then again.. I'm not the one up at night! :) I hope you break out of the joint soon. Hopefully without oxygen!