Friday evening

We've had a couple of awesome days this week- Emma Kate has made great strides in her PT and is walking unassisted now (albeit a little flat-footed still) and she usually only needs help if she sneezes really hard and it throws off her balance! She's squatting and standing up great and can lean a bit to reach for things. We even got to go to "Emma Kate's Personal Gym" where they have some nice equipment for her to play on and to get a change of scenery. Everyone has been really impressed to see how much she was getting out and walking around the unit! Yesterday we even met with Dr. Rutter again to make sure we were doing the right thing- she has been doing so well and breathing so easily even with activity, compared to what she was doing a couple weeks ago. But yes, this is the right path to take... he was pointing out to us (again) that all it might take is another little illness to "have the wheels fall off the cart again." So we are scheduled for surgery Tuesday morning at 7:30am.

The cardiologist did find something on her echo to suggest that she might need some dilation at the site of reimplantation of her left pulmonary artery and ordered a nuclear scan to determine perfusion of her lungs to decide if dilation was necessary. Emma Kate did awesome for the scan- they just used her PICC line to inject the isotope (?) and she had to sit under a camera for 4 minutes being very very still. She was actually so good that she was moving a bit from laughing and being a little overzealous with responses to our questions! Luckily the scan was good and showed no defects, so we are good there. Looks like we're just up for revision of the airway surgery, thankfully.

Today, I guess you could say... "here we go again..." She started with a low grade fever, high heart rate, and increased rate/effort of breathing very early this morning. It has responded well to tylenol, but she was under the weather all day, just hanging out in bed and taking short naps throughout the day. They did a nasal swab and a pharyngeal suctioning for cultures and testing to determine if there's anything serious going on. She finally perked up a little bit this evening and was enthusiastic about dinner but didn't actually take a whole heck of a lot in. She fell asleep very easily this evening and hopefully will have a quiet night.

The poor little girl has definitely been touched-out, and she's upset easily by getting her temperature taken in her armpit, or even trying to wash her. Hopefully the emotional effects of being messed with constantly will wear off after being home for a while, and the same hope is there for eating- hopefully she hasn't just had so many things shoved in her mouth and nose that she has an aversion to putting food in her mouth. This could be more complicated than I ever would have thought, even after we end up going home.