Tuesday, October 6, 2009

Kayla had the flu

Kayla got out of the hospital last Thursday. I have meant to update but it is hectic around here. She came home taking so many medications and some of them have to be taken 4 times a day. They had her on Tami-flu, even though she didn't have the swine flu. The infectious disease department at the hospital sent the swine flu test twice because they didn't believe the first result that came back. So the whole time she had to be in isolation and we had to wear masks, gowns and gloves the whole time. I don't know about you but wearing a face mask for 8+ hours gets very itchy and irritating. Not to mention my glasses were foggy all day.
She is still struggling with c-diff. She takes her Flagyl 4 times a day but her poop is still not as hard as we would like it to be. I read on the Internet that her chances of having it again are greater now that she has had it. awesome.
I didn't even know until yesterday that she had the flu. They were taking her vitals and asking me about her medications and the nurse says "I see here that she had type A flu while she was in the hospital." I told her that I didn't know that. It would have been so awesome if the hospital staff could have informed me about that. It explains a lot. My poor baby was so so so sick.
Back to yesterday, we had to be in isolation yesterday. I am so glad that they brought a movie cart in. It made the isolation bearable. It took 3 hours for her labs to come back and her ANC was only 259. That's low. Her doctor decided to give her Vincrystine but not methotrexate. I'm glad that she was able to get some chemo but I just hope she doesn't go to 0. It is pretty much a given with Kayla that if she goes to 0 she is going to get admitted for a fever.
The doctor that was doing rounds when Kayla was there told me that Kayla has been so sensitive to every stage of chemo, which is a good thing because it means that her body is responding. She also said that Kayla has been hospitalized more times than any other kid she has seen. She meant in the ratio of time since diagnosis vs. hospital stays. 10 months since diagnosis - 14 hospital stays.
We go to clinic next Monday to see what her levels are and to see if she can get Methotrexate. Her Dr. said that he is not going to up the dose (which is normal protocol for this road map) he is going to keep her at the one the had her on.


Anonymous said...

Your little sweetie is such a strong little spirit. She is in my thoughts and prayers, as are you. Thank you for sharing her story with us.

Mrs. Fish aka Two Fish said...

Dude you are amazing!! How strong you must be for your daughter, I would be losing my silly little mind sitting in a corner sucking my thumb. You are my hero! Sending love and well wishes to Miss Kayla! Look at those cheeks and that smile, praying she gets better soon love!