We were able to "check out" of Primary's on Thursday afternoon, September 29. I didn't dare tell anyone that we were probaby going home. Didn't want to jinx it. I got home about 8 pm. It was a little overwhelming at first because I had to get Alivia's meds done and it was time for the other kids to go to bed for school the next day. But man was it great to sleep in my own bed that night.
It is so good to be home. We've had a very relaxing weekend. We just stuck pretty close to home. We listened or watched several of the sessions of general conference. There were some very powerful messages given.
The kids are out for potatoe harvest for the next 2 weeks. Hopefully, we've got a little time and can do some fun stuff while they are out. Usually we try to take off and go camping or something fun like that, but with Livi's condition these days, we won't be going too far from home. We're still hopeful that we'll get a liver very soon.
So far Alivia is doing really well since we got home. She is so excited to see the kids. They can make her smile and laugh more than anyone else. And they just love to entertain her. I think they really missed her while we were down at PCMC. She took a day or so to decide she wanted to eat anything through the bottle, but I did get her to start eating orally again...as little as amount that they will allow her to eat at a time. Right now she only can have 15 mls every 3 hours with a max of 100 mls over 24 hours. For those who don't now, that is 1/2 oz at a time, with a max of about 3 1/2 oz every 24 hours. That is not much, but hopefully it is enough to keep her satisfied. she also gets to eat solids as she feels up to it. That ought to help as well.
Friday and Saturday were busy with home health and trying to get educated on how to do her TPN and her pump feedings at night. I picked it up pretty quickly and was able to do both on my own after just 1 day of them showing me how to change everything. I am seriously amazed at what we can learn to do to take care of our kids at home.
I laid her on a blanket on the floor and she just rolled and rolled. It is hard for her to do that in a hospital bed. She was really having a good time with the freedom she had. I think she just loves being home and getting back to a normal routine. Hopefully we'll get to be home for a while, or atleast until they get a liver for her.
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