High/Low

Highs:

*KayTar was an angel. Really. A complete angel. I could not dream of a more well behaved two year old.

*Julie and the little P's visited. They braved driving into town and getting lost just to visit us! Patience made KayTar a book, although she was too shy to tell her the story. KayTar loves it all the same. She's dragged it around quite a bit.

*My sister and her family came up, KayTar had a great time playing with her cousin.

*My parents and Josh and BubTar visited last night. KayTar loved it. It made me a bit crazy, though. Hard to pay attention and control the environment when so much is going on. But it was nice all the same.

*Tons of one on one time with KayTar. Cuddles included. It was a bit exhausting at times, feeling like I was on all the time, but it was also really nice to be shut in with her for a bit. And the cuddles...oh, the cuddles.

*She won the art project contest last night! It isn't a contest, so much as a name drawing of participants, but she won! She got a Ty Beanie Bear, which she loves and hates. She likes to give it a bit hug and then wants me to take it far, far away for a while.

*BubTar got to go up to the radio station and sit in the DJ booth and request a song! His studio guest name tag said "Bling BubTar". Heh.

*The staff was brilliant. Everyone was so kind and helpful.

*KayTar was really friendly with the nurses and doctors. She taught one of her nurses to say "I'm the nurse" in sign language! They all thought she was adorable, especially because she knows all about their equipment and was pretty willing to assist them. She even told the doctor, "Bye doctor. Thanks." after her LP. What a sweetie.

*They brought dogs around to visit with her. Pet therapy, it is called. Pretty nifty.

*She didn't have to stay in the bed full time, she was hooked up to a backpack that was plugged into the wall and gave her range of the room, thankfully.

*The LP went well. She cried more when getting her electrodes removed that when she had her LP. They gave her Ketamine, though, so she wasn't completely lucid. I was totally nervous about it...I almost cried whenever they would discuss it with me...and it turned out to be smooth sailing. Not exactly pleasant, but none of the tests are, honestly.


Lows:

*Our sleep schedule:
Night one: She went to sleep at 10pm, I went to sleep at midnight. She woke up at 1:30 and was awake until 4:30am. Rounds starts at 6am.
Night two: She went to sleep at 9:30, I went to sleep at 10. She woke at 1am, and was up until 3am...rounds start at 6am.

*Discovering that KayTar is allergic to all adhesives. The first night, she woke up because her ear was 3-4 times the normal size. I couldn't even feel cartilage anymore, just hot gooey flesh. It was a bit like this:



But just the ear portion. It was starting to spread around her neck and to her other ear as well. The nurses and techs came in, the floor peds resident had to come by, they had to get Benadryl approved for her and then it took the pharmacy ages to actually deliver it. They wrapped her head in something different the second day, but last night she still woke up with some redness and swelling. We fell asleep before the Benadryl arrived, though. Today one she was unhooked and I bathed her, we discovered she had a rash all over her torso and swelling every place that she had tape or glue touching, even the mild kind. She was all red and puffy. They noted her chart. No more sticky for her.

*Being sprayed with vomit in the middle of the night with no hope of showering.

*Having to change KayTar's sheets twice in the middle of the night because of the vomiting.

*She didn't have an episode. Or a drop attack. And she only had a couple eye movements. I feel like it was a huge missed opportunity. A huge, expensive missed opportunity. But they did at least get a couple eye movements (and they didn't see EEG changes during them, we have to wait for the final report, though) and I know it wasn't a total waste. But still. Ya know.

*Hearing that if need be, they'll call us back for a repeat. Ack.

*The wait for results

Neither high nor low:

We were on live video 100% of the time. Its an interesting feeling when someone comes in and says, "Oh hey, when _______ happened, that was hilarious!" and you realize they really are watching all the time. Like the Real World, with electrodes.













And again...thanks to you all for your wonderful support. I'll be by your blogs shortly. We are still in recuperation mode, though. KayTar napped for 4 hours today. Its going to take a while to get back to normal. See you soon.

ETA: We're home, they released her at 11 this morning. I forgot to say that. ;) I had it up in an earlier post, but I replaced it with this one.