My name is Holly. I created this blog to document my now 4 year-old daughter Jailynn's journey with ACC, cortical dysplasia, and epilepsy. Also her brain surgery (hemispherectomy)and recovery.
Monday, February 16, 2009
bye picu
So yesterday we left picu to to be put on the regular childrens floor. No bathroom in the room, it is the same room we were in thursday. had to take what we could get cause they've been short on beds. When we got here a neursurgeon on the phone told our nurse to stop food by mouth since she didn't have full time nurse supervision until a swallow study or something could be done. He was not our actual surgeon just a doctor that the nurse ha to talk to to get new "orders" from. I said no way n put my foot down. I know he thinks he was making the right call, but I told the nurse to tell the dr I respect his opinion but I would be here all night and then dad would be here when I am not here, plus it was getting late so she probably would have much more today but I can watch her drink as well as the nurse can and she was fine all day with little attentivness from her picu nurse that other baby in our picu room had issues all day and most of her attention. Its 6 am friday morning and jaiynn hasn't ha any problems from drinking juice and eatting jello. She did hoever wake me up a million times by maiking her monitors go off because she was trying to pull the pulse-ox thing from her toe. I put her socks back on and so did thenurse. Stinker. She also urned her body in a half circle and had her feet haning through the crib bars funny girl!
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Yeah!!!! Good for you. So glad that things are going better. Chance has his 6 month follow-up (it will really be 7 months since surgery) on March 3. Maybe we'll see you. You all are still in our thoughts every day.
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