Neuro, and weight loss

I knew going into yesterday's three dr's appts that I would leave them feeling discouraged. Our appointment with Endo went fine no changes...Kyle will need to supplement his cortisone for up to a year and he'll need stress doses of steroids anytime his body is in stress..still concerned that his sugars aren't holding so we need to monitor those super closely. After endo we headed up to GI we went to talk about Kyle's TPN schedule and his labs from the day before. Since Kyle is totally on TPN his weight has to be monitored closely, I can tell just by picking him up that his weight would not have increased but I was so hoping there would have been a gain at least. I wanted to cry when I saw he had a loss....we went into a room and waited to see the GI dr..(who I have to say I LOVE) she seemed as bummed as us. She also wasn't happy with his labs from the day before or how he looked. Kyle's been really pale and very sleepy the last few days. Our biggest concern is that he's still twitching and has started to tremble and zone out on us. Very scary to see....his GI dr is quickly pushing the paperwork for Columbus..at this point it looks like Kyle will have to be med flighted, it's just far to risky to try to fly commercial with him.

We have a call in to Neuro...hoping for a response today..I'm now in full blown panic made over trying to get everything ready for us to leave. I have mixed feelings over the whole thing but I keep telling myself we have to do this, we have to keep fighting this...

xoxo
Kate