Friday evening- scope update

Emma Kate went into the OR yesterday afternoon for her exams and we've got some answers- sort of. The GI scoping went well, there wasn't anything abnormal found, so biopsies were taken to be sure, and we should hear back from those first of the week. There was a little submucosal bleeding in her stomach that he said was typical for vomiting, nothing to be concerned about, sort of like bruising. So for now it looks like unless the biopsies show something crazy, we're just looking at gagging and vomiting due to mucous secretions and hard coughing. The bronchoscopy showed that there were little granulomas (?) on either side of her vocal cords, likely due to all this time with the ET in place. They say that should resolve with time. The patch site looks much the same, not fully collapsed but "squished" and now there is a little bit of granulation tissue on the surface of it. They have switched her from Pulmicort to nebulized Ciprodex to help address that. They did see some secretions down there and they did suction what they had access to. So the final word was that she will need another surgery- the slide will fix the issues and actually leave her with an airway slightly larger than a normal kid her size would have. Ideally we would wait a few more months before going in again, but since she is having issues with coughing and vomiting, they feel it will need to be done sooner rather than waiting. We don't want her to be on TPN long term while we wait, if she's not able to breathe comfortably enough to eat well, or if she is vomiting too much to maintain herself. Dr. Rutter will be back in the country on Monday I believe, and we're deferring to him to decide the time frame we're looking at. So, while we're sad to hear that she does indeed need another surgery, we're relieved that they feel so positive about what her outcome will be, and also that it seems to be a pretty clear-cut decision.

She's doing great by the way- she can walk independently now, just needing someone right near by for balance support when needed. We've enjoyed riding around the pod in a wagon, and she's walked the area several times as well! She did have some increased breathing effort and rate this morning, we suspect that she had some inflammation due to the procedures yesterday, and some inhaled epinephrine and IV steroids really helped- she's almost back to where she was prior to going into the OR yesterday.