I'm not sure where to start tonight but I feel like had better put something up here to help piece things together. I'm sure there are lots of 'bits' of information floating around.
Things have continued to change for Charlotte since the last post. Day by day she seemed to lose a little ground. After the sleepy day (in the last post) she did perk up and have a couple of better days.
On Thursday we saw quite a sudden change, after a fairly normal albeit sleepy morning she woke up from her nap and was not able to focus. She was still quite with it and didn't seem alarmed that she could not see. She woke up and asked for a chocolate, I passed her one and held it up for her to take it. She kept staring straight ahead and asked for a chocolate. I said here it is and she held out her arm in totally the wrong spot and made a swiping motion. After a few little tests of waving hands and flapping in front of her eyes it was clear that she didn't see any of it, she did not even flinch. Within an hour she could see a bit again. This seemed to come and go for the rest of the day.
That bump of swelling on her head continues to swell, a new bump started to surface between her eye and ear. It looks uncomfortable but she never complains about it. We have been slowly increasing her morphine hoping to ease any pain she might be feeling.
Friday she was sleepy again but this seemed a little different. Even when she was awake and alert its seemed like she couldn't hold herself up. Her head wobbled quite a bit, like when your falling asleep in the car doing that head bobbing thing, like that. I cant remember but I don't think that we tried sitting her up on her own, she would have slumped off the chair. But she was awake and alert, asking for chocolate and by suppertime she ate a good bowl of noodles with cheese. As long as she was propped up on someones lap she seemed to be happy.
Saturday morning she didn't want up; she took her morning meds and was swallowing ok, she was responding a little to questions, nodding her head or squawking, but she just didn't open her eyes or want to be moved out of bed. Her breathing was laboured and throughout the day got worse, a big deep breath followed by way too long of a pause, followed by some short panting, it is a style of breathing that indicates that a body is slowing down. Her doctor was by a couple of times and once again had to tell us that this could be the beginning of the end. We are all used to Charlotte and her amazing turnarounds so I think everyone is hesitating to label anything. By noon she seemed to have lost any capacity to communicate, I'm sure that she could still hear us, her eyes seemed to scrunch tighter at appropriate moments. We got geared up in case she was not able to swallow, her morphine can be administered under her skin so we set that up for the night. We are a little nervous giving her oral meds in case they don't all go down and we will not know how much she actually got. The other worry is that they could get into her lungs.
Saturday night went smoothly, she continued to sleep in her new big girl bed, Rob and I tucked in on either side. Her breathing got a little better throughout the night. Her morphine went in fairly smoothly. So I guess it was a good night.
Sunday morning came and she was breathing a little easier and was slightly alert again. We got a few nods and squawks around 10, by the afternoon things had regressed again. So we have spent most of the day tucked up on her bed reading her favourite stories.
........... I am being beckoned to help get things set up for tonight.