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!