Tuesday, September 25, 2012
I was going to post that Reagan slept fairly well last night but the more I think about it...she may have been awake at 2am and then never went back to bed! That's how delirious I am at night now...I can't even remember what time it was that I first saw she was awake!!! I know for sure that she was awake by 6, but I may have seen her first moving around at 2am when Ryan woke me up. She's been in another spunky, squealy mood today. Yes, at first look she appears to be happy, but at the same time you have to be careful not to send her over the edge (the nurse shaking a tambourine or me talking to Mike over the cell phone just about drove her to tears). She had OT and the PT this afternoon and then we headed into the medical center for a follow up appt with GI. I was nervous about our drive in because Ryan had just woken up (and obviously wasn't going to sleep in the car) and I knew Reagan was on edge. Then just as we were leaving the neighborhood Reagan started to freak...she was just about in tears. So I turned the car around and came back to the house to grab some Lortab (just in case). Then we headed into town and Reagan ended up falling asleep and Ryan was a perfect angel, staring out the window the whole time. The appt took a while just going over her most recent issues, but at least we didn't sit in the room for 2hrs this time. There is some sort of halt in production of the Nexium packets she takes. I'm not sure how long this is going to last, but it's already been going on for a couple of months (we just happened to find a pharmacy that still had some). We already tried switching her over to Prevacid, but she threw up every single day she was on it, so obviously Prevacid is just not going to cut it. We have to come up with other options but for now we have about a months worth left and we're hoping they'll start making it ASAP! We also discussed increasing Reagan's formula intake. She's been right at 40lbs for a while now and she's kinda on the low side of what she should be getting. I'm still not exactly sure what we're supposed to increase it to, so I think I'm going to follow up with his office tomorrow to see if we could talk to a nutritionist. While there, I also gave the doctor the cell number of Reagan's palliative care doctor and he's going to talk with him about what tests have already been run and what tests might be worth doing in regards to sorting out her bad days. Like I said, lots to talk about. When we finally got out of there I had to rush home to get the nurse back (her shift ends at 6...we didn't get back til 6:10...oops)! Thankfully, Reagan behaved herself and Ryan slept the whole way home! Reagan still is a little spunky, but hopefully she'll get some sleep tonight...if not, the night nurse is here and will be happy to pick her up!