Emma Kate's first "toooobless" walk around the unit

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.

Surgery Day

Surgery will be Tuesday the 11th at 0730. It is about 6 hours total where she will be on heart/lung bypass. If all goes to plan (yeah right), we are in PICU for a day to two and then complex airway for 2 weeks and then RM House for another week. Then discharge! Robyn has more details so we'll let her post more if I missed something.

Monday evening

We got to meet the infamous Dr. Rutter today! He was very nice and explained his plan for Emma Kate... He feels like she is far enough out from the initial surgery to go ahead and do a revision. We will be getting her another CT angiogram tomorrow and a cardiac echo wednesday. Then she will go to surgery as soon after that as they can get her booked. So it could be even as early as Thursday it seems. The hope is that she can be extubated the following day, spend a few days in PICU, then a couple weeks in the complex airway unit, then a couple weeks locally (at RMH I hope) then we should be able to go home. Knowing Emma Kate, she will defy all logic and upset the plans in many ways, but that's the basic idea. We've learned well that things don't happen until they are happening, so we're still waiting to see. Dr. Rutter plans to do the slide tracheoplasty technique on her, and they have to get a bit creative with the design since her trachea has already been opened and patched, plus she has the pig bronchus that changes the options too. He hopes that this will be a permanent fix and that she will be asymptomatic for life. She will be on cardiopulmonary bypass again for the entire surgery, about 6 hours he estimated. Hopefully she won't have the same issues with blood pressure and edema like she did after the last surgery... One other risk (of many, of course) is irritation of her left recurrent laryngeal nerve and resultant weakening of her left vocal cord. Usually this just causes a hoarse voice for a few weeks or an increased rate of aspiration, but it usually gets better with time and sounds like it should resolve completely if it does become a problem.

Right now Emma Kate is doing great- she is breathing slower and more comfortably than she has since November 1, and is walking unassisted around the unit several times daily. She is also having fun riding in the wagon they brought for her to use. She still has significant issues with coughing, and we seem to be having a bigger and bigger issue with vomiting and hope all it is is withdrawal symptoms... they've stepped up her taper quite aggressively and she's supposed to be done in just a couple more days. Today the vomiting was much worse, and sometimes seems unexplained. We're having more and more trouble getting food to stay down, and she's still up on full TPN and Lipids. This has become quite the puzzle. Hopefully it will respond to some zofran and the poor girl will catch a break!

Emma!!

Yay, we have our camera again!!