How It's Going

Heart wise, until the echo is done next week - Olivia looks great.  Her activity level is up and you can tell she just feels a little better every day regaining her confidence to walk and do things on her own.  Speech therapy started up again yesterday as well and the therapist was very pleased that verbally Olivia hasn't regressed at all.

The gagging/vomiting is still going on, she's now using it as a tool in her negotiation arsenal.  Real downside to this is that she's now refusing to finish all of her milk that has her meds crushed in there - to push it is to be rewarded with real throw up; to let it go means that she's possibly not finishing her meds.

Her appetite seems like it's decreasing but I think her tummy is still getting acclimated to this new blood flow and the fluid restriction is also messing with her digestion.  Everything moves much more slowly.  Poor Livster.  One chest tube site is healed well enough to leave without a bandaid, the other still needs some protection.  Her incision site is still really swollen in one area making her look a little pigeon chested.  The IV site that she kicked out on her right foot is now wrapped in Second Skin and hopefully gets better soon, not a serious wound but she really did hack herself pretty well there.

Sleep had been going better, she wants to stay up until 9 or later which we've been indulging in hopes of her sleeping at until 6 or 7am, but this week that's not even happening.  Last night she had another nightmare or anxiety attack when she woke up in the middle of the night and couldn't find her Dada.  Those make nights extra long and the following work day a bit more painful.

It seems nothing is of real concern but every time something goes differently than the normal path, I do have heightened awareness and want to watch her like a hawk.  Any change of behavior, eating, sleep could be a sign of cardiac distress but yet there's nothing really pointing to that.  She is relatively happy but in the moments that she cannot express what she wants - the tears come fast and fierce.  We are all just hanging tight for things to normalize and they will, it will just take time.