Well we had fingers and toes crossed that we would be leaving the Hospital by the end of the week...but NO it seems we will be in for at least another week :(
NOW...Rani has developed a horrible cold, the poor thing they have to suction her nose, just so she can breathe, so of course she is using all her energy to fight of the cold, which in turn means that she is losing weight...but way to much weight. From this mornings weigh in to tonights weigh in she lost 100 grams in 12 hours!!!
We keep getting so close to the 6kg mark again and then she goes backwards...both John and i are getting very frustrated by the whole situation...it seems that we are just sitting in the Hospital watching her being fed by the pump and getting the same Meds (except for the 4 new ones) that we were giving her at home. And now she has managed to catch the cold that is going around the ward. I personally think that she would be safer at home.
I want some sort of a normal family life, we haven't seen our other 2 since Wednesday morning, as they are staying at Mum and Dads. Mum is going to the Hospital in the morning, i go in the afternoon and John comes after work. I guess I have just had enough, it has been 16 days and I guess I look at it like to start with she needed the tranfussions of Albumin...but now apart from being weighed morning and night, there is no difference to her being at home. Even our Specialist said the same thing on Monday as well as telling me we could possibly go home at the end of the week.
So since my last update, Rani has had an ultrasound...which suprise, suprise showed that her liver has become worse!. Mum was there when that happened and she said that Rani was so excited to be in the lift and of the pump and out of the room, smiling at everyone, she probably thought she was going home :(. then today she had a sweat test, and we have had 24 hours of poop collection - to check fat absorbtion (what a fun job that would be...NOT!!!) and they have put up the calories and intake of her bottles.
So hopefully tomorrow we will have the results of all of these tests and find out what the go is.
plus to make me even sadder, the lady next to me (Zena) the one I made the card for, her daughter is able to go home tomorrow (she was in 3 days before me) and the lady across from us whose daughter also has BA is going home as well, so it will be an empty room until the new lot arrive. We thought/planned we would all be leaving together..oh well not to be.
We also hoped that Rani would be out on Saturday as it is our Wedding Anniversary and we thought it could be a double celebration - but it looks like we will be in the Hospital Saturday and my sister is coming in to sit with her Saturday night, so we can at least go out for dinner :)