I was able to coach cheer last night (thur) while Taleah stayed with my mom. She was miserable and had been all day. I immediately reached down and she felt warm. I took her temp and it was 101.8 which was above the allowed temp. I paniced for a second and then knew it was time to take action. Ahhh! I was trying to remember exactly what Dani prince had told me. Call Primary's, call pediatrician and then the peds floor to tell them we were coming. Marsden's office was not quite understanding, but we got it worked out. We rush to the hospital so we can get admitted, access her port, draw blood to send down and then start the antibiotic within 2 hours of her fever beginning. Stressful. I was hoping that we could go a little bit longer before having to deal with the fever thing.
The accessing was ok, she dealt with things pretty well (probably because of the oxycodon). Marsden came and checked her out. Her breathing was pretty rapid and her blood pressure was a little high. Her WBC was 1.7 so they thought she was way low. He informed us that we were probably staying the night.... ahhh! Better safe than sorry. Long night but not horrible. I was convinced that we would head home by noon. Her ANC came back 1400 so I knew for sure we would. After talking with Marsden, we decided we would be ok to go home. She was crying, "Mom, I want to go home!" Just about broke my heart. We got everything ready, discharge papers signed and port deaccessed.... the nurse stopped us and said, "sorry to say but your cultures are positive." My heart dropped. I wasn't even sure what that meant. Bacteria in her blood and can be very scary. I just couldn't believe it. I had to break the news to her. It took everything I had to not break down. I have to hold it together when I am with her. One of my biggest challenges. Not only did she not get to go home but we had to reaccess her port. Awesome.
To be completely honest, with the Leukemia diagnosis... before we knew it was cancer they said "9 times out of 10" it's not Leukemia and then it is. Then with the fever and the blood cultures "9 times out of 10" they don't come back positive but then it does. I am tired of being the "1 out of 10". Can my poor baby catch a break...? We are not even 2 weeks in and she has already endured so much. It just doesn't seem fair. I hate watching her cry and go through so much. I don't know how much more of it I can take. I keep hearing that I am strong, but sometimes I don't feel strong and I don't want to be. I don't want to do this. I know there are other people that are worse off. I know there are kids that are suffering more than my child. I know there are parents that are hurting more. BUT it doesn't make it any easier.
She has been doing a lot of resting. There have been some moments of Taleah personality. It kind of seems like she is in a little pain, but overall better today. Her hair is shedding much more. A lot actually. I think she is starting to thin, but not completely fall out yet.
The Desert Hills game was fun to be at for an hour. They raised money for our girl and made the cute poster. People are so generous.
I was feeling pretty good about things. We had been to clinic, RTU, pharmacy, home routine for a week. We had the calendar and game plan. I am a planner and it seemed like we had a plan and I was ready to get it going. This whole hospital visit was not part of our "plan". I have been mad and angry. And... mad!
The day is almost over and I have figured out that the fever visit is part of this. They are expected and that is why a "plan" is in place when they do happen.
This "plan" is throwing me a major curve ball and I am still trying to sort it all out. All I know is Taleah is doing amazingly well. She is stronger than I will ever be!