Infusion Day! Our first infusion at Children's Hospital in Detroit. We arrived at 9a. We had to register(we will have to do this every single time)then we were take upstairs to the 4th floor, infusion suite. They got us settled and called the Dr. and Nurse to get the show on the road. They got a urine sample first and then were ready to start the... IV. Avery was NOT happy when they were looking for the perfect spot to insert the needle. She screamed and was sobbing(and so was mommy) I just hated that she had to go through that. :( They got the IV in and we had to wait a few minutes until the med came from the pharmacy. The official meds started dripping at 11:15a. And they/we forgot to give her benadryl and tylenol before, so she got that at 11:15 also. Sooooo....2 hrs and 15 minutes later..we were on the way! She is doing great now...singing twinkle twinkle in the crib...talking up a storm and eating. For the 1st hour the have to take her BP, temp and oxygen levels every 15 minutes. Then after the 1st hour they check them every 30 minutes. It is gonna take some getting used to. She also keeps bending her arm right where the IV is..so it beeps everytime and we have to remind her to straighten her arm out. We are all hanging in there. The staff and nurses are SUPER NICE and accommadating. That makes this a little easier. 2:15 she just finished the Myozyme drip and is now doing a saline drip for an hour.....then I don't know what is next. I think we will all be super duper tired and will sleep great tonight. If we don't talk tonight...we will talk tomorrow! Thanks for all the positive thoughts and prayers. Now lets just hope this helps little Miss Avery!
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