We've encountered another setback. Katie has still been losing weight (down to 5lbs 1 oz from 5 lbs 7 oz). Her doctor yesterday believes she's having to work too hard to breathe. All of her sats and blood work have been great, but she still has some stridor when she's agitated. Because of the weight problem, he put Katie back on CPAP, which means we're back to the ventilator.
The times we've tried CPAP before, Katie really hasn't liked it. She doesn't like it this time, either. She has had to be sedated. They put her back on CPAP b/c it can stint her airway open to help her breathe. Katie has one of two problems, or a combination.....either she has a "floppy airway" or scar tissue at the top of her trachea. The "floppy airway" is when the trachea is like a flimsy, rubber tube that collapses when she breathes deep. It's supposed to be like a rubber tube with ribbing (aka. cartilage). The fix for that is to hopefully grow, or possibly eventually a tracheostomy. The scar tissue is from the tube rubbing. The fix for that is surgery.
I'm going to see is she put on any weight with CPAP. I feel like the ENT will be in to do a scope on her this week. I want to know exactly what the problem is, not just guessing and trying things. I know the doctors don't know everything, but it's extrememly frustrating to hear, "Let's try this...."
I've got more to post, but I've got to head out. I'll put up more tonight.