We had Waverly's GI appointment yesterday morning. It went really well. It was basically informative. Matt and I wanted to educate ourselves on a feeding tube - what the surgery is like, how it will effect her food intake, pain, etc. The doctor walked us through the procedure and what life looks like post tube. For as scary as it may sound, I actually feel a lot more comfortable about the option. It is still going to be a huge emotional hurdle when the time comes to get the feeding tube, but at least we will know what we are getting into.
After discussing her most recent swallow study, going over the disease progression and her eating habits in the home/school, the doctor does think she is a candidate for a feeding tube. Fortunately, we have time to wait. Phew!! She hasn't lost weight or had pneumonia. Hopefully we can continue to manage the swallowing problems without intervention. We will continue using the thickener in her liquids. We will puree her foods and have her snack on dissolvable solids.
I actually left the appointment feeling quite positive. I was able to leave holding on to the way things are for a little while longer.