We were discharged from the PICU at 11am this morning! I can hardly believe that we actually were able to leave the PICU. Gracie is doing great. She seems to be enjoying the quietness of having our own room again and I am enjoying being with her all the time and taking care of her. But I must admit that it is hard not to have a nurse with her 24/7---really unless needed the nurse only comes in to do vitals---every four hours. So needless to say I feel the need to stay with her every night--I'm afraid she'd be left alone crying for too long and she'll of worked herself up too much.
Gracie has some major goals:
1. she needs to gradually be weaned off the adavan and methadone (this will be a long process)
2. We need to see if she can come off of continuous feeds and do bolice feeds. Currently she is getting 23cc an hour, so they want her to be able to tolerate 46cc every two hours and then watch her for a day or two and then see if Grace can handle 69cc every three hours. All along we will be trying to get her to learn how to drink from a bottle. This is the goal that is going to determine when she comes home---if things go the way that is hoped by the doctors Gracie could be home in a week.
3. I need to learn how to care for her and how to manage her meds. She needs to do a car seat test
I know she will be able to accomplish these goals its just a matter of when she does it---everything is on Gracie time---I'm hoping that her time frame has sped up. But in the mean time I am enjoying watching her sleep, caring for her, and just being with her.