Last night she was in and out of sleep a couple times. One was a doozy and I had to get her to wake out of her fit and calm her down. We had to get up early this morning to be at a 7:30 appt for the chemo, blah. She was a bit whiney, but who isn't that early in the morning? We got there a little early and grabbed some breakfast in the cafeteria. When we went into the clinic, one of the nurses gave her a doll that was bald. It is a gift from some group that makes them and leaves them for kids to have. Then they got her tubie in and took her blood and she did awesome! I think that was the best time yet! Then we set up the candy land game to start playing. However, we were then called away to get her stats and go to a room to see the doc.
Her number came back 540!!! Boo!!! So, we got a clearer explanation about the numbers. A neutrphil count of 1500 or lower is considered neutropenic. 1000 or lower is like medium neutropenic and 500 or lower is DANGER neutropenic. At that point is where they worry and admit you to the hospital. So, Taylor is almost to that point right now. SO, if she gets fever again, most likely we will have to be admitted to the hospital. Pray that she does well this week and doesn't get sick. Also, since her weight is doing so poorly, they are afraid of her being malnourished. So, we talked to the doc and a nutritionist and they suggested a feeding tube. While we were talking, Taylor was curled up in my lap almost falling asleep. I guess those meds do make you tired. I stroked her hair as she lay there and I realized that some of her hair was coming out. So, I guess that process has started :(
Anyway, we went back out to the treatment area and someone else had taken her seat with the candy land game set up. So she started crying and I had to calm her down. We picked another chair and then the child life specialist came to see what was wrong and she said she had another candy land. She left and quickly returned with the game! She is a hero! We played that and some other games while she got her chemo. Then it was time to get the ng feeding tube. The hero came back with us and brought a doll that had a tube in her nose so she could see it. She explained to Taylor what it was and why she needed it and what would happen. You could tell she understood; at the end she started getting sad and scared. It was so cute and sad at the same time. Then came the nurse. The She did NOT like getting the tube in at all. It took 4 of us to get the job done and she screamed bloody murder. Poor thing! i hate that she has to go through all this stuff. On our way out the door (10:30), we ran into the teenager. She had a bad week as well; although she didn't have to go to the hospital for anything. Her hair is also starting the fall out process. It was good to chat a bit and then we were glad to be on our way. It was hard to get there early, but it was nice to get in and out so fast and get to pick whatever seat we wanted.
Taylor fell asleep on the way home. She looked so tired and "sick" like. We picked up her siblings from our friends house (which was so awesome the she watched them and they got to have a play date!!!) and then we went home to eat lunch. She was not hungry, so she didn't eat till like 1pm. She is still a little whiney and looks really tired but she is playing video games. The nutrition people are supposed to come by dropping off the machine and "food" for her tube feedings. She will be getting feedings during the night while she sleeps. This should be interesting to learn to deal with. Anyway, Here is to hoping for a good week!
No comments:
Post a Comment