OK, we've made it through the first few days. I've wanted to pull my hair out a few times, but it's not been all bad.
First, the good news. I haven't had to change the set again. It's been working OK. His basals haven't, but that's another story. His sugars after I posted yesterday ranged from 174-244. When it got to 244, I inspected the site and saw some pink in the canula. I called Animas. They took my name and number and a very nice tech person called me back in a couple of minutes. I explained the problems I had been having with the sets and that now when I look at it I see pink (? blood) in the canula. The lady I spoke with said she had a PWD living in her household and sometimes you might see some pink in the canula and everything would be fine. She told me to just keep a check on his sugars and call the endo. as needed. She also said they make a comfort short that I may want to try since Riley is so young and doesn't have very much fat on his body. She was very understanding. And her encouraging words kept me from ripping out yet another set. His sugars during the night were: 186, 130, 110, 204. He was 183 when he woke up. The reason he went up from 110 to 204 is that he got 2 peanut butter crackers. I'm just so afraid of nighttime lows. I spoke with Dr. M this morning and she said that she thought that his sugar would have been fine without the snack and that if I feel the need to feed him tonight, to just give him one cracker instead of two and see how it goes. He did spike up at 10 AM today (to 337) but came back down on it's own.
I faxed all of the sugars to Dr. M and she called me back. She made some changes to his basal. Now from 8-9 AM, he gets .075 and from 9-10 AM, .05. Then alternate between .05 and .075 every hour until 5 PM and then go to .05. She's keeping the nighttime basal the same for now.
My nervousness is dissipating a little now. I've calmed down a bit and decided he's not going to go into DKA at any moment. I've realized that I just need to chill and stop checking his sugars so much.
So, that's how it's going for now. It's a little better than it was.
As a side note, Gonzaga is playing the West Coast championship game tonight at 9 PM on ESPN. The game last night was very good. Gonzaga beat USD in overtime. Even if you're not a basketball fan, just flip to the game for a second and watch Adam Morrison in action. It gives me hope to watch him play. Riley really can do whatever he wants!!