Today began with Bella waking at 3a.m. And not going to sleep until 1:30 p.m. She also had a fever of 100.8 which isn't a big deal unless you live in a world of central lines. She is also not doing great with the withdrawals of the drugs for last two weeks. So when the doctors made rounds I asked why were we staying in hospital and he answered to get her feeding again and to wean the Ativan. I had already decided if this is all that was keeping us here I was going to asked to be discharged. I explained to him that we had more experience with getting Bella to eat, so we had that covered. He couldn't tell me how long the Ativan will take but that I couldn't just opt out of giving her this. It is being given into her g-tube every 6hours and I am left in the room with all her sadness. She can shift from pure joy to complete sadness and can't stop moving her legs. So I said give me the weaning regime and I and my great nurses can handle this and at home we can provide many good distractions as not to depend on this medication longer than necessary. The only hold out was the low grade fever. He wanted to draw blood cultures and have us stay til results were in which takes 48hours. I agreed to stay 24 hours until preliminary results are in and I agreed if anything grew after that I would come back and readmit. Annabel has always grown something in the preliminary cultures. Of course, if she gets worse we would not want to be discharged. There are so many factors that play into Annabel eating again the amounts that she was eating when admitted. They are going to watch her dilated bowel loops as we all agreed these were probably present before Bella became I'll this go round.
When I get home I tend not to post as much. If she continues to improve then there isn't as much to report.
I want to take this time to say how much I appreciate all of your prayers. These words are not sufficient and do not begin to express my gratitude. Annabel's life has taught me so very much and she has showed me so many wonderful people who pray so faithfully for her. It is very hard to admit that at times I was just to tired, to hurt or whatever to pray. But knowing how many continued to pray for her, let me know she was covered, wrapped up and held so tight in our Mighty Gods hands...thank you, thank you