Benefit

We had Kylee's Benefit last weekend and it was a huge success. The number of people that showed up to support us was unbelievable. Kylee has just gotten home from the hospital the night before and was not feeling her self so she only made a short appearance. When she got there they announced that Princess Kylee was there and they cleared a path for her to get to the front. It brought tears to my eyes. Then Jason and I shared a dance with Kylee. We played Collin Rayes she's with me as it explains exactly how we feel. The girls exceeded there goal for money raised and it couldn't have come at a better time as I had to take a 3 month leave of absence from work. All of Kylee's Dr's appointments and hospital stays was just not allowing me to work and I was getting very woren out trying to do so much. I have many pictures and a video and will try to post some day...when I have some time.
Kylee has had many hospital stays over the past month. She is still having problems keeping her levels up for her WBC, platelets and hemoglobin. She got MRSA in her ear as well as an infection in her blood. Along with high blood pressure issues. This past week she had both an upper and lower GI done and we are waiting for the results of that. She also had some blood work done to check to see if she has a chemo sensitivity before we start chemo and she also had an MRI to make sure the tumor hasn't grown back. We are awaiting the results of all that too. Hopefully next week. We have also gotten the ok to start feeding Kylee by her J tube again instead of the TPN (IV feed). We got the ok on Monday but still have not been able to feed her. We found out that Kylee has an intolerance to sucrose and had to change some of her medicines. We also found out that her milk had lots of sucrose in it so we had to switch to a different milk and the DME company sent us the wrong milk so we have to wait a few more days to get it. Next week we are seeing the transplant team for a possible stem cell harvest. I have been getting lots of paperwork in the mail from our insurance company about her "transplant" and it makes it sound like a much bigger deal then they explained it to me so it will be interesting to see how things go.
After learning how to do IV's, TPN's and IV antibiotics I have come to the conclusion that I think we need more nursing help. I have done 10 days for getting up at all hours of the night to do the antibiotics and after having a night were I unhooked her IV TPN instead of the antibiotic I decided I probably shouldn't be doing it half asleep. However finding good nurses is hard. We have several really good nurses and I would be lost without them. They have done so much for us during this difficult time. We also have one of our old nurses coming back...Now I am just looking for one more but all nurses that call I seem to hit a dead end. I have learned over the years to always go with your gut feeling when it comes to nurses and never settle. I am trusting my daughters life with the so never....never...settle.