Wednesday, January 20, 2010

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 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...



Weerock said...

Kyle is the biggest motivator I know for keeping up the fight...

Hang in there, Kate. You know me...hairless dog.


Lauren said...


Thanks so much for the update- you guys are always in our thoughts. I'm so sorry the days appointments brought you more heartache. I continue to hope that Columbus will bring positive news your way.

Thinking of you guys always.

Mel said...

Another trying day :-(. As you prepare for Columbus, please know we are here to help in any way we can with Alex & Jack! Kyle is your strength and you are his! Hold tight! Love & Hugs, Mel

Karri said...

You know the mantra.. One day at a time. I know I need to be reminded of it myself from time to time.
You're always in my prayers. Keep faith that this next step to Columbus will bring you the answers you need, and want for Kyle.