Today was a day of learning and fear. I gave my first sub q injection. I let my daughter know that when we come home I will be the one giving her all her meds. She didn't want me involved with them at all but once I told her that was how it was going to be she was ok with it. I learned how scary a fever can be and to be careful not to mask one. I also learned that if I feel weird or am in doubt I should just call, there is no room for "wait and see" at times because that is when these kids pass away. I also learned that we have to let her be as normal as we can without exposing her to a bunch of germs, can you say balance, I was assured I would get to a point where I was good at that. We've also had a lot of bouncing around lately about who was going to make the final call as to when the foley would be coming out and if we were going to have to put a new foley back in or strait cath her at home every 4 hours. After days of talk the doctors decided to let us decide, how nice of them. So we are going to have them take her foley out and give her a few hours to see if she can pee on her own, even if it just dribbles out into the bed or a diaper. (this will make me the happiest) Or if she can't pass any pee at all :( then we can pick either the foley again which we know for sure she hates or the strait cath every 4 hours which we think she will also hate. At any rate I am wondering how the heck my parents ever came to the conclusion it would be ok to bring my sister home. I don't feel up to the challenge of keeping the house super clean and taking care of her needs as well as making sure everyone else is taken care of.
Good night all
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