Wednesday, June 17, 2009

Wrap it up with a PET

Mike took the first "shift" last night from 11-3. I had a hard time falling asleep, thinking someone was going to come in and make me get out of the bed next door. I finally fell asleep sometime after midnight. Of course, Reagan slept the entire time (during Daddy's shift). Then I got up at 3am and she woke maybe 5 min later. I was able to get her to drink some of her bottle though, which was good because she had to stop all food/formula at 8am. She had quite a few seizures during her time up and finally fell back to sleep around 4:15am. She woke again around 6:30am (Reagan's best night of sleep in a long time) when the nurses started coming in to prepare us for discharge. Prepare us for discharge? Wasn't this supposed to be a 24hr EEG?? Apparently that's not a literal term. I guess if you have a child that has very few seizures then they might keep you longer but since Reagan had more than enough (she had a good day yesterday with just a few here and there but this morning she more than made up for that) they were ready to get rid of us. And the fact that they had the room booked up probably played the biggest role in them kicking us out at 8am. The only problem...Reagan had to keep the EEG leads on her head for the PET scan (which wasn't scheduled until 1:30pm), so we couldn't just leave the hospital. We were stuck. Apparently they usually schedule the PET scans in the morning but for some strange reason they mucked this up (just our luck). Thankfully, the people in the the PET department were the nicest we dealt with during our stay and they gave us a room with a tv to just hang out in for the next 5.5hrs. About an hour before the procedure they started an iv and Reagan was not too happy about that. Then finally at 1:30 the EEG technician performed a 30min EEG and when he was finished he proceeded to rip the EEG leads off her head...lets just say she was not at all happy about that. Then they moved her to the PET scan and gave her some iv sedative. She responded really well, she just started drifting off and they only had to give her the one dose. The scan itself only took another 20min or so and then they came to get us and we cleaned her up and washed her hair while she was still out cold. They told us she would probably be groggy for a while so we high tailed it over to the hotel to take a nap! We went ahead and got a room at a real hotel, the Greektown Hotel and Casino, only a couple miles away from the hospital. We walked in and it was love at first sight. Big fluffy comforters on the bed, everything nice and new, it was heaven. We all took a good 3hr nap and then we woke Reagan up so I could feed her. She drank a big bottle very quickly and woke up in a great mood. She's still a little groggy but very sweet and happy. I love that sedative! Could we get some to go? Now we're just hanging out in our room. We got some Greek takeout and it was delicious! Apparently this is a highly populated Greek part of town (hence the name Greektown) so the food was authentic Greek and oh so good. Mike is dying to go to the casino but I'm hoping to talk him out of it. Nothing good could come out of that! So tomorrow is our big day with Dr. Chugani. We'll get the results of all the testing and his expert opinion on Reagan's situation. Please keep this in your prayers as well as a safe and problem-free flight home.



8 comments:

jocalyn said...

um yeah, I think with y'all's luck...ya need to stay far away from the casino! ha! Glad to hear you're free. Best of luch tomorrow!

Keri said...

Wow! I know it hasn't been all perfect but God has a plan for Reagan. We are praying extra hard for your appointment tomorrow. Peace for y'all and answers for Reagan! Looking forward to praying with y'all in person (and hopefully having lots more to praise God about in the very near future!)

Jamie said...

I guess they must have gotten all they needed from the EEG..I guess the whorter the better eh? Ohhh the lil shirt says it all..:) Your in my thougts..:)!!! Hopefully one step closer to the right treatmemt for lil Reagan!! Finger and toes people! keep em crossed!!

Jamie said...

...that would be "the SHORTER the better" whoops!

the Grandma said...

One look at those big gorgeous eyes and the Grandma is weak in the knees and in tears! Hurry home....I miss yall!

Heather said...

I checked for updates all day ... how did I miss this one??Still looks darling in the mummy head wrap I must say!Will be back a little later to check on how the meeting went.Sending extra prayers to you all today, as I know it is a big day.Love to you all.

blogzilly said...

Glad the tests are over and looking forward to hearing about the meeting.

Sophie's Story by Elaine said...

Reagan still looks as sweet as ever all wrapped up.

I've been thinking about you all so much these last few days. Hopefully by now, you all are back at home all safe and sound.