Hospital TuTu's and More Hospital Nights

Craig came and switched me out tonight so I am home with the other kids tonight. This gives me time to update on what is going on.
I want to start by telling everyone how great she had been doing. On Tuesday she was going through the halls of the hospital in her dress ups and talking to all the nurses and even hugging all of them. She was so much fun that the nurses and I decided to have a picnic with her. Avarie has been asking to have a picnic with the nurses for weeks now. I wasn't sure how we were going to pull it off and then one of the nurses had the idea of pizza. So we ordered pizza, had it delivered and then we all sat and had pizza and hospital milk shakes together. It really was a lot of fun. Avarie had an amazing day that day. She even got several of the nurses to wear her new purple TuTu and headband. It was quite a spectacle to get them all dressed up. The funnest was getting Chris to wear the TuTu. Chris is our case manager. He oversee's our whole case and helps get everything arranged for us. We keep him very busy. He is a very sweet and soft spoken person and wearing a TuTu is definitely something out of his comfort zone, but he did it to make Avarie happy. You can see several of the nurses and Dr's in the background of the picture having a good laugh. There were a whole bunch more behind me. Getting him into the TuTu was the highlight of the day for the whole staff. He was a good sport about it even if it was incredibly embarassing for him. We have such a great team that we work with. I truly feel like we are a team, they work with me and Avarie to help her. They are willing to go to great lengths to make her happy, we are surrounded by some good people.
Avarie also had a visit from a therapy dog named Vinny. He was so sweet, he sat by Avarie for almost 20 minutes and would lick her hand and leg, he even went and gave her a kiss, which honestly I was not crazy about, but Avarie loved it and her counts are good right now so I let him. She is not normally really big on animals, but she sure did enjoy Vinny.
Now the reason we are still at the hospital......
We were going to be coming home on Tuesday, but she spiked a fever Monday night. Fever's mean hospital stay for at least 48 hours. So we knew that would put us then until Thursday, unfortunately she has continued to have fevers ever since. They are not super high ones like she use to get, but they are definitely over the 101 mark that requires us to be in the hospital. They were still going to let us go home because all of her blood cultures are coming back negative, meaning that she is not growing anything in her blood, and she had been having no other symptoms, so they were going to write it off as a fever of unknown origin and let her come home Friday morning, but then the Dr really took a look at her mouth. Avarie developed a mouth soar yesterday and then today when the Dr looked her entire mouth is covered with them. She has Mucusitis (hope I'm spelling that right). It is a side effect of the chemo she just had. She won't eat or drink or even talk. Her mouth hurts so much that we put her back on PCA today. The PCA is the pump that allows her to push the button when her pain is too much. She also has the Fentanyl patch on, but she is in so much pain she needed something more.
Now knowing that diagnosis we understand why she had such a crazy bloody nose yesterday. Yesterday morning right after she woke up she started to get a bloody nose, but it just kept coming and coming. It got to the point it was coming out her mouth too. It went on for over 40 minutes, we couldn't get it under control. The nurse paged the Dr and ordered a Platelet Transfusion STAT. Of course ordering that stat does not always mean it comes right away. It took almost an hour for it to get there. We were finally able to get the nose bleed under control and got her platelets transfused but she continued to have small nose bleeds all night. Needless to say Avarie is miserable right now. She has gone back into her little shell. I would too if I was hurting that much. Its just hard to see. At least we had a couple of really great days. I am grateful that the people that surround her and care for her were able to see a glimpse of how wonderful Avarie really is. They see so much of the miserable, crying little girl. They have only recently been able to see a little girl that has such a fun, goofy, and loving side. Avarie has definitely been the talk of the floor amongst all the nurses and Dr's. When you are at the hospital long enough you get to know a lot of people and they are all rooting for Avarie and truly happy to see her come out of her shell, even if it was only for a couple of days. She is out of her shell more at home, but at the hospital this was one of the few times any of them were able to see it.