*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.
*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.
Kyla, I can't begin to tell you how much we sympathize and yet can't connect. We've never done one of these. Just know that there are folks praying (yes, I did that at some weird hour of the morning because I couldn't sleep) for you.
I won't say I'm the best of "advice for the soul" but I've sat in a hospital bed with my son trying to make sense of it all.
Please read my blog entries of the past two days. Note to others: I'm not promoting my site - I don't need it - I want Kyla to to have the same comfort I've suddenly found.
Kyla is in very good hands. we love you and will keep our fingers crossed.
Oh those pictures! She is just SUCH a trooper! And so are you! But those pictures just break my heart. You are all doing suck a kickass job of coping!
i've been thinking of you guys all day. i hope you know how much love and support you have here...we are all with you and hoping and wondering and knowing you are one of the bravest women in the world.
I bet you are exhausted. I hope it turns out to be worth it, with all the information you need.
I really hope that they got what they needed. I'm so impressed with how well you both handled all the stress.
I'm so glad to hear all the positives. And also that it is over! I hope you get some good information!
of course she was an angel
That was such a great update, Kyla. I can't believe how sweet KayTar looks with all those electrodes. I think it just makes her look so innocent and vulnerable and I just want to wrap her up in my arms and get some of those cuddles you mentioned.
I'm sorry that it felt like a wasted opportunity. I hope they were able to learn a few things from your stay there. I also hope you don't have to repeat it soon.
It would be so weird to be monitored all day and night like that. What about when you need to pick your nose or a wedgie. How embarrassing. I'm sure they've seen it all though.
Hope you can get caught up on your rest this weekend!
Oh, hon, I'm glad it went well, even with the unfortunate side effects and with no episode. Still, it must feel amazing to be back home and have it behind you. Well done, lady. And good job to you to, KayT.
She looks so vulnerable and darling in her little hospital gown. I hope that what they got from her eye movements will be more then enough and that she can be done with testing and just get to the work of being a little kid.
Oh, I'm glad you are home.
She looks so cute in those photos!
I hope you get good rest and good results. I hope that so much, friend.
Kaytar makes a cute little patient, just wishing we didn't have to know that. (((hugs))) my friend. Despite the highs and lows, you have completed one more thing on Miss Kaytar's "to do" list. Praying for you all!
She looks so small in the great big bed. I can't imagine how exhausted you must be and glad to be home. I hope, and I pray that they got what they need.
Rest Kyla. Rest Kaytar. Love to all.
Glad your back!! Look forward to hearing more!
She really was the most chipper little cutie pie...so proud of her packpack.
I can only hope the Ps and I can grow up like you and KayTar some day.
The Ps have been in a frame of being lately that...well, sorry. They did say from their POV that they had lots of fun and KayTar is really fun and had a cool hairdo. They enjoyed the letters, loads.
I hope they got lots of info. I hope the results provide what you need.
I know it was a trial, but to look at and listen to you, you never could tell. (HUGS)
Ravin' Picture Maven
So glad that experience is behind you. I understand your frustration, trying to verbalize the things you see Kaytar doing, and then to have a chance to show them on the EEG...only to not capture one. We've been there. Have any docs recommended video at home when it happens? While they don't get the brainwave read, at least the docs have a better sense of what you see.
So...did you take enough stuff? It sounds like the hospital was well equiped to help in the entertainment department. I hope you get some good rest yourself. Take care.
Kyla, I really hope they've got something for you. You and KayTar did so well, but I can imagine you have no desire to repeat the experience.
Crossing my fingers...
I'm glad she's safely home!
She is honestly the bravest child.
What a relief for you to be back home.
I just found your blog recently from one of jen's posts at one plus two. Our family went through this process (EEG, no episodes recorded) last summer and like Kaytar, the worse part was taking the electrodes off. It is so weird knowing they are watching and listening, I had to edit myself several times.
Best wishes to you on your journey, your children are so lucky to have you for a momma.
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