Not much rest was accomplished and in the end (today) we were finally able to pull her out of the nasty grumpy pain cycle. So, I say before any sleep has been accomplished for myself. Ren has already been down with Cordelia for three hours. I don't think Ren and I had three and a half straight hours of sleep in these three nights.
Unfortunately Raquel's eyes have been bothering her on top of the main issues with her right foot.
I can't stand that foot. It's crooked, has webbed toes, it turns inward when she walks and rolls over at the ankle.
Anyway, every morning once her medication catches up to what ever she's feeling, she'll finally open her eyes. She'll act somewhat normal, although the stare she gives looks like she's has the worst migraine imaginable. The tough part is, within a few hours suddenly they're closed. She'll wander blindly around for a bit then she goes right back into her spell of crying and making a lot of fuss.
The interesting part is how she responds to music when she won't open her eyes.
For those who don't know what work it is following a momentarily blind EB baby around your house all day watching and guarding her from herself. (for Renata)
One of the more memorable moments in the last few days was just before she was supposed to be asleep she started to convulse then threw up blood. She wiped her face a bit then just leaned over onto my shoulder then fell asleep.
If Cordelia puked blood then looked like she wanted to sleep, I'd think she was putting her head down to die and I'd instantly start losing my marbles.
Raquel chucks out a pile of blood, then looks instantly relaxed my inclination is to feel relief with her.
Such a different set of principles.
We've changed our dressing days to be Tuesday Thursday Saturday as too many days depending on nursing help, I'd have to leave work early. and that time lost never seems to get recovered.
Now, we will only have to worry about two days a week. I'm not sure why I didn't think of this before? As well, long weekends will not be so affected. Too many Fridays or Mondays get taken off the books or doubled taking away many of our allotted hours.
Due to this change we haven't done a change since Monday although we haven't really wanted to either. We had to do a emergency rewrap on Tuesday for her one foot as it made a mess of the dressings and was clearly bothering her.
With Raquel hitting many of our cues she's out of sorts today was shaping up to be one of the worst - ever.
I'm not sure why but when ever she gets an eye scratch she hates to be on her back.
It's also virtually impossible to do a pooh diaper alone when she's in this mood. In fact her knees are so marked up in the last few days from Ren and I trying to hold them apart to clean her or get the new one on. So doing a dressing change on days such as this are extremely difficult. Any time she's naked I panic, so when she's flailing her arms and legs the damage can be incredible.
What was worse, our nurse for today was sick. I instantly put out a long list of texts to possible helpers. A bunch replied, but Andrew was the first to commit. I had really hoped I could find two so Ren could get a break and take Cordelia up the mountain for a skate in the snow storm that was starting to blow over Vancouver. Shocking nearly everyone what busy or would rather stay home with their families then come and play nurse and get yelled at by me.
It turned out Raquel was rather docile.
I should go and get in my hours of sleep.
Last few nights our new system for Raquel has been who ever is closest to the door has to get up, once the person leaves the other remaining in bed has to assume the vacant position and be next in line. It worked, although still neither of us got any sleep.
Sleep my dear SLEEP!!