Friday, October 21, 2011

First dose EPI-743

Busy day, busy day. We haven't rested much on this trip, that's for sure. Last night Reagan was a little restless. We're not sure how much actual sleep she got, but we could hear her moving around when she should have been sleeping. She was asleep when we woke up this morning though, so that's good. The urine bag the nurse put on her yesterday after her procedure resulted in a failed attempt with a diaper full of pee, so this morning I had to put a new bag on her and try again. Thankfully, this mommy knows all too well how to put these bags on and I was able to get a good urine sample before we left this morning. We were supposed to meet the study coordinator at 9am, but she called us about 15min before (while we were still driving) and asked us if we could come an hour later...so we went a had a nice breakfast with our extra time. There were a few setbacks in meeting up with everybody, the coordinator was late and it took us a while to find the MRI nurse to draw Reagan's blood from the iv, so we didn't do the first dose of EPI-743 til 10:50am (almost two hours later than we expected). They did one blood draw before the medicine, a 1hr post dose blood draw, a EKG 2-3 hrs later, and a 3hr post dose blood draw (all of this went very smoothly because we were able to leave in the iv port from the day before, so they wouldn't have to stick Reagan multiple times today). Afterward we were free and clear to go! They gave us a cooler bag full of medicine to take back with us. We left the hospital and drove back toward Half Moon Bay so we could stop at one of the many pumpkin patches we saw a couple days before. We took lots of pictures...go to this post to see some of them! Then we drove along Hwy 1 toward San Francisco. What a beautiful drive. We made it to San Francisco (again) and walked along a pier where we had really good views of Alcatraz and the Golden Gate Bridge (less foggy in the afternoon). Then we drove to the other side of the bridge so we could see the sun set over the Pacific. We found a nice waterfront place to have dinner...where we had the best clam chowder and seafood pasta ever (although we're both quite sick now from all of the rich food). We got back to our hotel late and couldn't find any parking (they had some event going on and it was packed with non-guests). They had even filled up every last handicap parking place (not one car had a tag or plates)!!! We were a little irritated by that. Mike dropped us off a the front and had to park a long way away. Reagan was good all day today but she's been having a lot of chorea...moving nonstop and pulling at her hair constantly. She was looking tired and dozed off for a bit tonight but then woke suddenly and frantically, so I sure hope she goes back to sleep and gets some much needed rest tonight!!! Keep us in your prayers, we have a long day tomorrow heading back to Houston!!!










For some reason it keeps turning this pic sideways (even though I saved it correctly)...

3 comments:

Zoey's mom, Heather said...

Hey, I just ran past that view 5 days ago!! Missed you guys by only days... what a bummer.

Have a peaceful, restful trip back. Praying for that and we will catch up on Monday. Hopefully.

Debbie said...

Glad things are going well.

Do you get the drug to take home with you? Can you send some my way? Ha ha...j/k of course!
Did you like Dr. Enns?
K....enough questions....praying ms. Reagan responds well....hugs!

DEVIN said...

I pray Regan does well on the new med., yall have a safe trip back...