Tuesday, April 3, 2012

ENd of Day 4...

Okay, so I failed to blog on Days 1 through 3 because things have been a little crazy. Miss Bossy B has had intense pain and nausea, and they have had to give her boluses of extra pain meds on top of the continuous drip because she keeps waking up screaming. Yesterday, her counts were at 500, so we are still waiting for her to bottom out completely and then come back up, and as she does, the pain is only going to get worse. Her doctors think mucositis could be the problem, a side-effect of chemo that can cause sores in her mouth, but can also cause them all the way through her GI tract. There is nothing in her mouth, and we have been so careful about her oral care to prevent mouth sores, but as she continuously complains of stomach pain and she keeps throwing up, we can only assume that she has it in her stomach. The doctors tell me there is really nothing they can do except try to manage her pain.

Miss Boots herself seems to be in good spirits, as good as can be expected, anyway. She sleeps a lot more than usual because of all the pain medication, sleeping more than half the day sometimes, and then we stay awake all night. I try to sleep with her when I can, just to keep myself rested so that I can be as patient and alert as she  needs me to be.

Today, she arose fairly early according to our recent schedule, in order to spend some time with her father before he had to go to work, and then in the afternoon, they increased her pain meds so she slept the rest of the day until I had to wake her at 6 pm in order to take her medication. She has been awake since then, but mellow, and at the moment, she is watching Netflix on the Nook Color from inside her princess tent on the bed, peeking her head out every once in awhile to demand that I come sit on the end of her bed. The tent is fun, and something different from the four walls she sees every day, but it is also isolating and lonely, and Miss Boots does not deal well with "alone". Every five minutes or so, which is a lifetime in Bossy Boots, she peeks her little head out and barks, "Momma! Come sit on the bed! I can't eat, I can't sleep, and I can't even get my rest, you see? Come here!" We have a brief but firm conversation about her tone, respect for her mother, and the fact that Momma is working on something, and she scrunches up her little face into the most adorable of little scowls and pokes her little bald head back into the tent. God, I love this kid!
 Fort Bossy Boots...
 Getting ready to yell at me, until she saw it was picture time! lol

She has been playing with her Blood Transfusion Lalaloopsy every day, and had Daddy bring in her fancy doctor's "kick" (she can't say kit) so that she can be a good nurse to her babies. She demands fresh medical supplies on a daily basis from the nursing staff, and God bless them, they are only too happy to accommodate her. We color and do puzzles, put together the daily craft that she requests from Child Life when they come to check in on her. I try to keep her as busy as I can, distract her from her pain as much as I can. It's all I can do. The doctors and nurses all say the same thing, that her pain is only going to get worse before it gets better. All we can do is wait.

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