I like to document things. Obviously.
For me, I am a visual person so an image will bring back a flood of memories in an instant. Because memories get fuzzy. Especially when you’re under extreme stress.
So every day, at least once, I’ve managed to take an iPhone photo of Parker and looking back, I’m glad I did because she’s so sick right now but SO much better than she was over the weekend and I’ve already forgotten what she looked like just a few days ago.
This is Saturday morning. I took this to text to Tom and Sharon as an explanation of why we couldn’t go to the March of Dimes walk. This was taken maybe 30 minutes or so before her first seizure. And that is right where it happened. She just woke up out of that sound sleep. It literally makes me shudder to see this image because those moments before the ambulance arrived when I couldn’t wake her are absolutely the scariest of my life.
This is Saturday night in the PICU during maybe hour 6 of her 9 hour crying/moaning episode. When we couldn’t console her. When she was drugged beyond belief and starting to experience the side effects of the virus. This was just the worst day of our lives. Period.
Sunday. We were moved to the Pediatric floor and out of the PICU. Chris was lying on the couch, exhausted, during another one of her multiple hour crying bouts. I took this to remind myself how worried he was (he puts his hands on his head when he’s worried) but how strong he was.
Monday morning at 4:30am. They woke her at 4am so she’s be tired for the EEG at 8:30am. She said she wanted to paint (she was high as a kite this day still) so we got creative and gave her my toothbrush and some chocolate pudding! I will save those “paintings” forever I think!
During the EEG. She’s on my lap and the room was totally dark but I had to record her like this. Mainly b/c it kind of freaked me out and also because this was the test that proved Chris and I hadn’t lost our minds, she WAS acting differently and it wasn’t b/c of the medication!
Monday night she was SO “drunk” but at least not screaming anymore which was a HUGE improvement! And all she wanted to eat were “spicy chips”! We rarely have chips at our house so it was totally random that she even asked for something like that! And she ate THREE bags!
Tuesday morning Chris went to school for a while and in the hour before my dad got here she was happy as a clam and still very out of it. We keep calling her “high” or “drunk” because that’s just how she was acting and this was no exception. But for the first time she wanted to get out of bed so I was thrilled with how the day was starting out!
Up and eating breakfast yesterday morning.
Yesterday, post 104.8 fever spike (we had to strip her down to cool her temps) she finally perked up enough to play with her new princesses from GoGo. It was SO good to see her interested and see her fever going back down!
TODAY: Her fever spiked to 102 at 3am which secured us another night here tonight. But then at 6:30am it was down to 99.8 when she woke up so that was good it was going back down. Now, however, at 8:30am I’m getting a bit worried. By this time yesterday she was eating some breakfast, coloring, playful and talking. This morning her eyes look worse (half-mast), she’s not talking and very lethargic. It just feels strange to me and almost like we took a step backwards. Which bothers me. Worries me actually. I’ve told the nurse my concerns and told her that the neurologist wanted to hear about any steps backwards so we’ll see. I just fully expected her to wake up the same because besides the fever, yesterday was an awesome day personality-wise. I’ll keep you posted via Twitter and Facebook of course!
Thanks again for all the prayers and support… my gratitude will end up being a post in and of itself I think!