Let me start by saying we had a Wonderful weekend!!!! I hadn't seen Gracie so happy and giggly in a very long time. She did very well and we had fun playing in the playroom at the McDonald house, and out on the playground (until she saw the ants!! Lol) we went and got a pedicure and bought some things at target.
The home health didn't deliver the TPN until 10 pm Friday night, and didn't send a nurse. I calledthem and there was a miscommunication sonewhere along and they said they'd send one. They finally came at 11 pm and got it all hooked up. They came the next day at 2 just to get it ready and then I hooked her up at bedtime. She did very well all weekend and didn't puke or anything. She even ate 6 bites of lasagne! Also a couple animal crackers and a few bites of oatmeal :)
Saturday we went to the neuroblastoma walk and got our tshirts and then she said she was ready to go. She was just too tired from being up late the night before.
Sunday night we checked back into the hospital for week 2, Brandon arrived shortly thereafter and we were so happy to see him! Monday they started the IL-2 at 9 am and the ch14.18 and pain pump at 11am. They decided to keep the ch14.18 at 5 for 20 hours a day instead of going up to 10 for 10 hours. She has always run into issues in the past and had to go back to 5 anyway. She did well until about 4 hours in as usual and started having a lot if tummy pain. I was confused because last time she did really well on the fentanyl so I kept asking if it was the same rate and they finally figured out late that night that it was at 5 last time and only at 1.3 this time, they increased it to 3 for an hour and then up to 5. She still needed quite a bit more on top of that so the next night it was increased to 7. Since then she ha done much better as far as pain goes.
Last night she spiked a fever and had to get an IV in her arm. She was not happy about it but she held still like the champ she is and once again impressed everyone!! Her broviac has two lines but she has the IL-2 in one and the ch14.18 in the other, so the IV was needed for antibiotics since they aren't compatible with either one.