Infusion 21, 3-2-12

Rough one today. It started out ok this morning. The trip to Children's was fine and everything. The lady that checked us in was a little crazy but no biggie! The first try with the IV didn't take..so to speak. So another try...and it worked without too many tears. But about 3/4 of the way through Avery was saying ouchie so I had Karen(RN) take a look at it. It is rare that Avery complains during her infusions so I kinda thought something was wrong with the IV. Sure enough it was more than half out. ERRRRR! Karen tried to push it back in because we were so close to being finished but it didn't work and Avery was just screaming. So out it had to come. What does that mean for us...another IV must be put in. We have to get every ounce of the close to $15,000 drug plus we need to flush with saline at the end. Avery was not a happy camper. Screaming and crying Karen got it on the first try. Avery was exhausted so she fell asleep. She is just the bravest little girl I know. I looked at Lorraine and said "I am so lucky to have this littler girl in my life" tears of course too! I wish every single day I could take this disease from her.