Definite tongue action going on today...not sure what that's about!
Friday, March 7, 2014
We're home! I won't lie, it was a rough night (with EEG technicians coming in time and time again to fix loose electrodes)...but even with the noise of the compressed air, my girl continued to sleep! So that was a very good thing! She woke up just before 7 and was raring to go again. Very kicky and tense, but OK. These are definitely not "good days", but they are a far cry from the bad days she was experiencing just a month ago! So maybe things are finally working? Maybe we're headed in the right direction? I certainly hope so! We got out of the hospital just before noon and came home to chill. It's been an exhausting 24hrs! Reagan never dozed off, but I did! Ryan and I both took a nice long nap this afternoon (I'm a little worried about him because he didn't sleep well last night and was runny nosed all day today)! Reagan's still dealing with the nasty hair gunk! I'm sure we'll be picking it out if her hair for the next week or so! Hoping everyone can get some good sleep tonight...especially my restless little girl (those legs have been moving a hundred miles a minute)!
Thursday, March 6, 2014
Reagan slept well last night. She dozed off early and was so peaceful, I was afraid to move her so I left her in her tomato chair! She was still asleep this morning when I had to get her up to go to the hospital for her EEG. She was tense but OK (I don't think she appreciated being woken up)! She was very kicky in the car...always a challenge keeping her from banging her foot on something in the car (definitely need more leg room for this long legged girl)! Once we got to the hospital, admitting sent us to the wrong room, but we eventually found our room in the EMU. Everything was very slow going but they finally started putting the leads on around 10:30am. It was a nightmare! Not sure if it was the way they keep the compressed air blowing the entire time, or the fact that we were having to restrain her, but she went CRAZY! Screaming and crying and holding her breath til she turned purple! She's had A LOT of EEGs before and this was by far the worst experience yet! Poor thing! She was sweating so much that the electrodes in the front just would not stay down (and they did an awful job at wrapping it up)! She did calm down afterward and looked like she might doze off, but no! It wasn't until an hour or two later when she was starting to get aggravated again so I gave her clonidine, that's what helped her finally rest a little. When she woke back up we took her into the snoezelen sensory room two doors down! Very neat! We need some of these fiber optic lights at home! The rest of the night was pretty uneventful. Reagan's head was rewrapped for the third time (and was already back off by bedtime)! She fell asleep on her own around 9pm. She's been a little restless but she's still asleep! Hoping she sleeps through the night and we have an uneventful night! (She did push the seizure button once with her toe and had all of the nurses running in thinking she had just had a seizure!)
Wednesday, March 5, 2014
Reagan slept so so last night. I woke around 5:45am to find her completely upside down in her bed (no telling how long she had been awake)! I tried to just tuck her back in, but she had her knees pulled up to her chest, and there was no laying flat for this girl! I put her in her chair and I laid back down for a while longer. Meanwhile her brother woke up crying (setting the stage for his entire cranky day). Reagan was still very tense and agitated, but she somehow managed to hold it together all day! She tolerated OT, did better with speech, and OK with the teacher (she still really wanted her hand in her mouth a lot)...but overall it wasn't too bad of a day (way better than expected) and she fell asleep early on her own! Tomorrow we're heading to Dell for a routine 24hr EEG. Hopefully Reagan is cooperative! First time admitted to this hospital so that should be interesting!
Tuesday, March 4, 2014
I know, I've been horrible about posting! I'm on the day behind schedule right now! Reagan has been OK. Getting more tense, that's for sure. Today she's had her hands in her mouth A LOT! Almost to the point of gagging herself! Temperature regulation is a bit off now, hands and feet have been clammy here and there, and she's still very congested. She's also been sensitive to talking! There have been several instances where she almost started crying because we were talking! Not much of a fan of her brother's fussing either, but who is?!?! She had PT and speech today and did well with both. Tonight she was pretty tense and getting a little vocal/agitated but loosened up with clonidine and fell asleep! Hoping for a good night's sleep for my stuffy girl!
Monday, March 3, 2014
Reagan had a surprisingly good day today! She slept well and woke up around 7am smiling. She's been a lot less tense in her body today, not crunching or pulling at her hair all day (like she's been for the past week or so)! She didn't seem to mind us talking, although she did seem a little sensitive to air blowing on her. Her hands and feet were perfectly warm and dry and she didn't seem to be having any temperature regulation issues whatsoever. She wasn't super smiley, but very content. She had PT very early, then OT, then speech at noon, and then school in the afternoon and she did exceptionally well with them all! The only other issue is she's been showing some signs of nausea. More mouth movements, licking her lips some and sticking her tongue out, subtle signs. She's still congested and having a good amount of sinus drainage, so it's hard to tell how much that is contributing. Tonight it definitely seemed she had some gunk dripping down the back of her throat and it was making her gag (but she never threw up...too bad because that might have cleared it)! So aroind 11pm I gave her a dose of clonidine hoping it would help her doze off and stop gagging...instead it's made her crazy! She got very agitated, startred fussing, and was crunching a lot...but some Lortab and cuddles from Daddy finally settled her down and she fell asleep! Very strange turn of events after a very calm and uneventful day!
Sunday, March 2, 2014
My girl slept well last night, snoring it up in her humid room (with her vaporizer running full steam). Her nose wasn't as runny today but she's still super congested! She's also still very tense. She was super crunchy all morning, but she did loosen up a bit with the help of some oxycodone and a warm bath. Tonight she was on edge again with brother's noise and commotion, and then our (my) talking lead her to tears! Thankfully Daddy was able to console her. There are definite signs that she's headed in the wrong direction (so we're starting the round the clock Zofran & oxycodone as needed). Please keep her in your prayers! Today was Ryan's second birthday! He didn't have the best day (crying at church, several meltdowns at home, & trapped inside because of the cold weather), but he cheered up with a bath, bubbles, & sugar! Such a sweet boy! We're having a joint party with sister in a couple of weeks...Cat in the Hat themed (which is fitting since Ryan & Dr Seuss have the same birthday)! Both Reagan and Ryan love watching The Cat in the Hat Knows A Lot About That on PBS!
Saturday, March 1, 2014
Reagan had an OK day today. She slept well last night, especially considering how congested she is! Poor thing! She is SO stuffy and refuses to breathe through her mouth! She's been a little more tense today. Still super crunchy, hands tangled up in her hair, but a few times this afternoon she was either borderline tears or she actually did start crying! Definitely getting more sensitive by the minute. We took a nice walk this morning down to the park. Ryan fell asleep before we got there! We waited for a while, walked around some more, and finally he woke up and played a little. It was a nice day for it, warm but overcast so not too hot! Reagan was good and seemed to enjoy getting out! Glad we were able to get out today as the weather is supposed to take a turn for the worse tomorrow!