Putting on the brakes...

Well, this day couldn't be more anti-climactic if it tried. I don't know whether we should be praising God for the apparent over-reaction of the speech pathologist on Friday, or be angry that nobody is moving fast enough. We met with the general surgeon, Dr. Snyder, this morning. He was very nice, as helpful as he could be, and I was happy with him. But of course, he walks in, sits down and says, "so what can we do for you today?" He hadn't even read the chart...I knew it wasn't going to go the way I had hoped.

Essentially, he agrees that Andrew needs a g-tube. He didn't feel that further testing was needed and that he didn't think it was reflux related so he would see the need in doing a pH study to test for that (so if not reflux...then what). We talked about who would be the person to tell us what the next step would be and he said that he would have his nurses call over to GI to see if we could get in to see them soon. The nurse came back and casually picked the date of August 19th to put his g-tube in.

Really?

She walked out of the room and I looked at Jason and said, "He went from needing to be emergently admitted, to being scheduled 2 weeks out, and we still have no idea why he is doing this and I have no way of knowing what to feed my kid, or how to get him to drink."

Andrew was starting to break down, so Jason took him on a walk and I went to go confront someone to get some answers. I was nice, but very firm. I said that I was fine waiting on the g-tube if people didn't feel it was emergent, but I was not happy with being sent home without knowing how to feed my son. I'm almost out of thickener, and would need to get more. They were very helpful and got us over to see OT. We met with the therapist and she talked through foods that were the "most safe" (as he aspirated some on all textures), and discussed how to get good nutrition down him. She definitely thought he needed the pH study, and thought that getting into GI was the best bet. I called back over to the surgery clinic (as they asked me to) and they offered to move the g-tube surgery up to Thursday, but of course, if we do that, then the pH study would not get done, and we would be putting the tube in with absolutely no information on why and possibly put a tube in a kid that would also need the fundoplication (tightening of the upper part of the stomach to prevent reflux...needed in kids with severe reflux). Does your head hurt yet? 'Cause mine does, and I even understand all this language...

So, where we're at is...sitting at home. Waiting. Thinking about ways to make this go faster, and yet happy that maybe we don't need it to go faster...

My goal the next few days is to figure out how to blend, thicken, freeze, and fortify foods so that Andrew is getting in optimal fluids and nutrition. The nutritionist met with us in the OT department and calculated that he needs roughly 36 oz of fluids a day...he gets maybe 12 oz. My work is cut out for me.

Giddyup...