It is now 12:50am, officially Monday morning and Harlie's still up, with no signs of being tired. I turned off the TV at 8pm, brushed her teeth and her hair, read her a bedtime story and took out her hearing aid. Lights were off by 8:30pm.
They tried to do vitals at 9pm. She was moving too much and would not stop so they could get an accurate blood pressure reading. I told them to skip it.
She's told me she's itchy about 15 times. I've changed her diaper at least five times since 7pm. These new antibiotics she's on are taking it's toll. I forgot to tell you that her last several IVs have blown. On Saturday, instead of doing another one, they agreed to switch her over to an oral antibiotic. It's worse than the IV one.
About an hour ago she asked for her game (iPod touch). I was hoping it would calm her down and make her sleepy. So, I gave it to her. Then she asked for her hearing aid. And without even thinking about it - I said no. She asked again, but I held my ground and signed that she needed to go to sleep. She stopped asking and started playing.
And then I realized that I just told my daughter that - no - she isn't allowed to HEAR. And I feel like crap. For so many reasons.
She can't sleep because she's itchy. So, I got up to try and scratch her - again. And discovered that her bed was soaking wet. They are giving her water through her g-tube until 2am so she'll be well hydrated for surgery in the morning (when you are hydrated, it is easier to get IVs in). The med port came open and they "fed the bed" instead. Darn it! She only has 45 minutes left to get water now. And there's no telling how much actually stayed in her belly. Grrr!
So, I asked them if they can give her something to help her not itch so much and go to sleep.
She has a dry bed now. But because of the humidity from the trach collar, the leads that monitor her heart rate and respirations are not staying on. So, the monitor starts beeping. It's really obnoxious, if you ask me. And don't even try to put the leads back on. She fights you and says "ow" over and over. Which is ridiculous because there is NO way that hurts. She just doesn't want anyone touching her in any way. And I'm starting to lose some patience. Not all of it - just some. She's got to learn to pick her battles, for crying out loud. I don't know when that's going to happen, but I will be very glad when she finally gets it. All her fighting only makes everything harder on her.
It is now 1:28am and her iPod's been taken away, she's still tossing and turning, yelling "Mama" and signing "itchy", the monitor is still beeping and I've got the freaking hiccups. And now I'm itchy.
Ahhh, the meds are here. If only there was some for me, too.
It is now 6:30am and we both finally fell asleep at some point. Thankfully! They will be here in 20 minutes to come get her and take her to the OR. Hopefully everything will go as planned!