Today (Saturday) was a harder day for Jaylie. She has been really tired all day and has not eaten much at all, which is normal. She wanted to stay in bed or on the couch a lot today and watch movies. She started feeling bad but didn't tell us, I could tell something was wrong so I kept asking her and she kept saying she was fine. She started throwing up everywhere, it got all over her, her bed and her Hello Kitty blanket and pillow. Next time I will know to bring 2 blankets and pillows just in case she throws up on them. It was so sad and she was really upset and crying. She calmed down after we got everything cleaned up and got her back in bed. We had a talk about telling us when she is feeling sick, for some reason she doesn't ever tell us till after she throws up. The nurse gave her ativan (the same drug she gets for anxiety when her port is accessed, it also helps with nausea). She started feeling better after that. She got cyclophosphomide again today. Then we made a trip to the library for a new dvd and went to the playroom on the 3rd floor to get a henna tattoo. The hospital always has fun little activities and things going on for the kids. The artists were really good and Jaylie loved hers. Kip and I were able to be with her all day today because my mom had the kids. Anyways, Kip left later to see the kids and meet them at home. Jaylie and I watched High School Musical 2 for a little bit but she was feeling really tired so we stopped it. She got in bed and I could tell she wasn't feeling good again but she said she was fine. I tried to get her to eat and drink but she didn't want to. She took one bite and then threw up all over the place again, it was so sad. She was upset and crying and hurting. I asked her why she didn't tell me she was feeling sick, because I asked her a lot if she was sick and she kept saying no. She said she was scared to tell me. That broke my heart that she is so scared. It took all I had to keep from balling right then, some tears fell but I held it together somehow. We had a long talk about telling me how she feels and that it is important that I know when she is sick or hurting. Poor little girl, its so hard to see her like this, it kills me. The nurse gave her some more ativan but she didn't eat or drink anything. She fell asleep fast though.
(Written on Sunday Sept. 18th) I never posted what I wrote last night so figured I would just add to it this morning.
Jaylie had a good night. They were only making her pee every 3 hours so it wasn't a bad night at all. We both slept as well as you can in a hospital :) We are so excited to go home! Hopefully we will be able to go soon. They said she can go home as long as she is keeping some fluids down. I am scared she won't be able to because she is still sick. She woke up this morning not feeling well so we gave her some ativan. She still gets zofran around the clock too, but the Cisplatin she had the first day is known to cause nausea like this. The ativan doesn't seem to be helping too much. She says her tummy feels a little better but she won't eat or drink still. I got her to take 2 sips of water about ten minutes apart so I will keep having her take a sip every few minutes. The last 2 times she ate or drank anything she ended up throwing up so I worry she will just keep doing that. They said for the next 2 days she will probably be nautious and not eat but as long as she is getting fluids she will be ok and start eating again after a couple days. They said if she is throwing up and not getting fluids then we have to bring her back in and get her on iv fluids. We go in to the clinic tomorrow to get her Nulasta shot, which helps her counts and the on call doctor said if she needs fluids tomorrow they could hook her up and give her some there. Hopefully she will start feeling better and will be fine. I know I put a lot of details in here, sorry if they bore you. I want it all for my record.
Slick Willy, one of the pet therapy dogs. Jaylie loves when these dogs come!!
Dad and the 3 kids. Its always crazy when all the kids come up to the hospital, but its so much fun seeing them!
Jaylie and her Hello Kitty's