Don't Cross Me

When I am as tired as I was yesterday, it is a BAD idea to cross me. Little Man was asking for someone to come play video games with him, so I asked if someone could. I was informed that due to H1N1 they had to change the rules and no one on "purple precautions" (don't ask me, I don't know!) could have the volunteers come in. Then I said, well let's get a tech to come in and play with him. I was informed they were all too busy to do that.
I got pissed! My little guy has been locked in a room for almost a week and the ONE thing he has asked for, they said no. As far as I am concerned, if a child has a request, the answer is never NO, it is, "well that won't work, but let's find something that will." I just got a straight up no. It was their bad luck that Little Man's doc happened to show up just about then. He asked me how I was, and I told him angry and he asked why. What made me really angry is that Child Life hadn't been by, not ONCE in five days. Not even for an initial assessment. The doc got mad and I am sure he gave Child Life an earful. There are policies for just about everything there and I know that ignoring a child for five days isn't one of them, so they were caught with their pants down and feeling dumb.
Pretty soon child life shows up and very nicely played video games with my boy for 45 minutes.
Bad luck on their part, to tell my boy no for the one thing he has really asked for and to do it on a day when I had gotten about 2 hrs of sleep. If they had done their job, this wouldn't have been a big deal, but they hadn't and I ended up crying angry, angry tears.
I came home last night while my Knight in Shining Armor (he says the only thing shiny about him is his head!) took up the post. Little Man was already back on oxygen, so... I have NO idea when we are coming home. Little Man is doing so much better all around though, I can tell he is recovering. I got him to smile and actually laugh yesterday by being very silly and he loved it. It did my heart so much good to see his sweet smile. He is drinking enough on his own now and doesn't need an IV anymore. He is playing more, talking more, being more reasonable. Even though I am so sad to still be stuck there, I am taking all the positive signs of recovery and chalking each one as being one step closer to being home.
I am wildly impressed with my own cleverness today. Last night, I was calling our Sat respite person to cancel when a thought occurred. Would said respite person be interested in coming and playing video games with the boy while Bald Man and I got a couple of hours away? The answer, YES! And my response? Whoo hooo! So that is plan. I got to sleep in my own bed. I slept like a log last night and woke up feeling ever so much better. And now, after posting, a shower, breakfast and back to Sick Kids R Us by the big stinky lake. Then, some time with my honey. Nice to have some positive things tucked in around the not so great stuff.
Much to everyone's amazement, Bright Star continues to cling to life with humor and strength. The plan is to have her come home on Monday so she can be home to die as she wishes.
Thank you for your kind thoughts, prayers and words. They are coveted and treasured for the gems they are in my life right now. Mwah to all of you!