Good Morning

We've had quite a rough night last night. Not rough in terms of her being super sick, it's more so mommy who's having a rough time. It started yesterday evening when we had our 'hotel' room door open. Chelsea loves to watch people in the hall (although there weren't any) and there is a nurses station across the way she can see. She was babbling like crazy (can you say speech therapy???) and being her normal spunky self when our nurse came and closed the door. "I was told to close the door because she's on isolation," she explained. Well this was news to us for a few reasons:

1. We had a baby gate up this weekend and Chelsea's door was open...nobody said anything.
2. One nurse came by and told us that was the best idea ever (the baby gate)!!!
3. Sombody else (I can't remember who, wink wink) told us that they put a gate up for another child who didn't have parents with him and was on isolation, so he could see everyone in the hall.
4. And finally, our little buddy Brandon was in isolation for a long time when he first came here and he and his mommy used to sit right in the doorway all the time talking and watching people near the main nurses' station.

So I was extremely frustrated last night, and my response to that is shutting down. I just didn't even want to talk to anyone for fear I might say something I'd regret. After I went to get my dinner my nurse had to ask what was wrong, she knew something was up. What I wanted to say? "Whoever told us to shut the door needs to worry more about what's up her ... than what Chelsea's doing. Obviously that person doesn't know the benefits of social interaction for a young child with a disability (or any child for that matter.)" What I did say? "I just find it ridiculous that we have to shut the door on Chelsea when her RSV test was negative and there was nobody in the hall anyways to catch her 'coodies'." Of course there were two other nurses sitting up there and they all had something to say about it....blah blah blah, I don't care what they say, she doesn't have RSV!!! Then the more I started thinking about it, I'm now wondering if they even have positive RSV test results for her. That test was done in the ER in our home town and I seriously doubt they sent the results to Children's Mercy, I could be wrong, but I doubt it. They're probably just going on the fact that I said...she tested positive for RSV. So wonderful, I told on myself!

And things didn't get better once we went to bed. The good news was she went to sleep fairly quickly (only 18 minutes of fierce back and forth rocking mixed with a constant contraction of my arms keeping her in a straight jacket hold). We ended up with the same care assistant from the night before, and I'm starting to notice a trend about her. She wakes Chelsea up, and then leaves! The night before, around 4 am, I looked over and asked, "is she awake?" The CA answered, "yes, she's awake" and then turned around. I threw my arms up like, what the heck?!!! Then at 1am Chelsea woke up crying in her sleep and I look over and her crib rail was down!!! I about flipped out, in fact I thought I was dreaming, like surely not! Yep, so I jumped up, snuggled her for a minute then closed her in. Then at 6:30 my baby doll woke up crying again, so by this point I'm guessing she's likely in pain (today's day 8, just about the time she starts to feel ucky from the chemo). I asked the nurse for some pain med and was trying to unravel Chelsea as she was wrapped in her tubing from fluids. I just couldn't figure out where the tubing was headed, and I realized the CA had ran the tubing through her diaper when she changed her over night! Geesh. I asked if we could not have her again. I don't request not to have a nurse or CA very often, but I can't handle another night like that.

Fast forward to this morning, my little goofball Chelsea wakes me up by flipping the lights on and off, pulling the nurses call button out of the wall, chewing on her tubing ... and the nurse comes in and asks what's wrong? Rude awakening I guess. We're now watching Baby Signing Times for the 372nd time this round. Our nurse practicioner has already been in and admitted that the door closed thing seems ridiculous. She's also going to check and see if Chelsea and I can go outside tomorrow since it will be somewhat nice and her counts are still above 500. Our nurse for today also said she didn't think it was right that we had to keep the door shut, and she's going to check on that for us. Let's keep our fingers crossed that they allow us to get some air here in a little bit and open the door!