081207 - UK

Mary Ann was on the scale again today to make sure that she’s get enough nutrition now she has to ask for it and eat it herself. She has lost weight! Down with 55g to 2125g. That’s not good. It’s a lot to loose in two days. So back to the scratch; she has to have the tube once in a while again. Neil and I decided that she should try the bottle for max 30 minutes because it exhausts her too much. After those 30 minutes we give her the rest of the milk by tube. I just hope that the staff will do what we have decided. Sometimes they don’t because they have another opinion, they didn’t know what they should do, they didn’t read our instructions or … ? These days we feel frustrated. Every time they change our ways of doing thing we start from the beginning, we feel. Of curse we don’t but it sure feels like it. Now they tell us we can’t get her home for Christmas. Imagine having to celebrate Christmas at the hospital now when we are so tired of being there.
A good thing: She took all her vitamins on a spoon yesterday. That is also what she should do, when she comes home. So some things indicate that she’s ready soon. Another good thing. One of our friends invited us for dinner. It was so kind for her, especially because she is very busy her self. It gave Neil a break with his cooking every day and our both some nice quality adult time with friends. We are a little afraid that we will miss out on some good times with friends. We don’t have the time and energy to be the ones who keep contact as we normally do. So it was very appreciate that she had invited us. We even got some other kind of food home, she had prepared for us. So now we have dinner for two other days waiting for us in the freezer for late days at the hospital.