Today was a rough day for Aubree. She is not feeling good at all. The side effects from the chemo take about 10 days to kick in, and I think that they finally are here for her. She hasnt been really eating well the last couple of days and i feel so bad. Today we ordered her some pancakes and she was so excited about them, but wouldnt eat them. Its not because of nausea, she has none of that these days, it almost seemed like the easy part because we controlled it so well with drugs, but she has sores in her throat and in her intestines. They have been explained to me as something like a cold sore. So this makes her not feel very good, she did ok for my mom this morning but most of the afternoon she wouldnt even play. She loves her window in her room, we will stand there and she will watch all the cars and people come and go. We stood there for a couple of hours today. I also started her on pain medication every 4 hours, I am even willing to wake her up at night to give it to her, I think she feels that bad. She also received platelets today, her count got down low enough that they felt ok giving them to her, her red blood cells look good and I dont think that she will need them for awhile, it would be awsome if she started making her own before she needed more, but I wont hold my breath for that at all!
Its so weird to think that when I got here with her at the beginning that it was so hard trying to make decisions for her about her medication, and now its almost second nature. I never would even think about being one of those demanding parents of the nurses and Dr's. In fact I would never use my call light to call the nurse, I would stick my head out the door to see if they were busy. Now I always use my call light, and I don't care if they are busy if Aubree needs something. I can tell I am changing in this way also because today I was really irritated that they were thinking of maybe giving platelets to here when I thought that for sure they needed to. I am not so quick to just go with the flow anymore. Its just crazy how quickly it changes, and to think that was only 2 months ago. But I have found that it doesn't change everything, when we first got Aubree's diagnosis I was really good about praying, but now with things not new anymore, I find myself thinking have I prayed today. I thought for sure that being here in the hospital that it would be second nature to always pray and do those things for me, to help me keep the spirit, but I have found that when you get use to a situation that you have to always be mindful of doing those things. Got to run Aubree is awake!