Home then back Again

So I know I have been really bad about updating lately. I think life is just starting to really catch up with me and I am starting to feel the exhaustion more then I have in the last 8 months of this whole ordeal. I will try to keep this post as short as I can and still give all the latest info.
Avarie was able to come home on a pass on Friday. She was having a great time, but was going to have to go back on Monday night to restart rehab on Tuesday morning. On Monday it occured to me though that I am her mother and I have the right to say "No Thank you". I had agreed to the extra week of rehab because our pre-testing schedule up at Doernbecher was not going to get busy until next week and an extra week of rehab would be great for her. But once I got her home and she was crawling and scooting all around the house I realized that she was getting better therapy at home then at the hospital. Not that that was always the case, she needed the wonderful therapy that Rehab had to offer her, but now she is to a point where her being at home and able to play with her siblings and cousins is pushing her more then we could push her there. We could only push her as far as she was willing to go, otherwise she just shuts down. She is four and you can only push a four year old so far. But at home she is wanting to play and so she spends the whole day pushing herself to try to keep up with her siblings and cousins. We didn't have to push her, she was pushing herself. That is the best therapy she can get right now. She will need more therapy later, but for now we felt home was the best place for her. The Dr's agreed and we had to go in and have her discharged, because technically she was still a patient since she was only home on a pass and not released. We had a fun Memorial day playing with cousins and going to her cousins Payten's 10th birthday and then to a barbeque at my brothers with all of her cousins from my side of the family. Her counts weren't great and in hindsight I probably should have just stayed home with her, but I wanted her to play and just be a four year old. I'll make better choices in the future I promise. The reason I say hindsight is yesterday she developed a fever. Fevers mean trips back to the hospital. Craig took her in and has stayed with her this time. I will go and trade in the morning. Her fevers have stopped, but when they did a culture on her blood it came back positive for a bacteria. We don't know what kind yet, but she definitely has something. Its probably not serious, it just complicates things for transplant. She is suppose to be having a lot of pre transplant testing done, tomorrow being her first and now she can't go. She is suppose to be having surgery on Monday, but that may be put on hold. They haven't decided on that, they are doing a wait and see.
Our Dr's ordered a CT for Avarie's abdomen this morning, that was before the positive blood culture came back and they wanted to make sure that the fever and belly pain that she was having wasn't Colitis again. The CT did show some inflamation to the colan, but we don't know if that is inflamation that was already there or new inflamation. A new thing popped up. For people that have been following this from the beginning you will understand more of this then new comers, so I will try to explain the best I can about it. We have some new nodules. They are on her kidney's again, GRRRRRRRR!!!! This is so frustrating, but at the same time maybe we will be able to find an answer this time. Shortly after Avarie was diagnosed with Leukemia she developed these nodules all over her body and they were on her Kidney's then too. We biopsied several of them with nothing coming back positive. There was no bacteria, no fungus, nothing! We had on that showed a little fungus, but the Dr's think that that was a false positive. They think it was contaminated. So we spent months treating her for everything. We had her on heavy duty antifungals, and by heavy duty I mean ones that required constant monitoring and it required us to try a little bit first to see how she reacted before they would actually treat her for it. She was on so many antibiotics trying to cover for any possible thing because she was really sick and they had no answers. We had Dr's consulting from other hospitals and we became good friends with all three of Emanuels' Infectious Disease Dr's. It was a very scary time. Since then our Dr's have come up with a possible diagnosis, but they were unable to confirm it. They think she might have this really rare syndrome called "Sweets Syndrome". Her nodules look like this syndrome and the high fevers that she ran for those two months fit and the joint pain fit, but there were several things that didn't. We just don't know and going into transplant without knowing what that was is a very scary thing because if it popped up when she was completely without an immune system and we didn't know how to treat it she could be in a lot of trouble. So tomorrow we have a biopsy scheduled to try to see if we can get some answers. If they can't get to the nodules then they will have to schedule a kidney biopsy, which is much more invasive. But at this point we need answers. So we are back in the hospital to stay for a while. Transplant is still planning on going ahead on schedule, but we'll see. I have a feeling we may get pushed back a little, but I've thought that before and been wrong. Hopefully we will just get some answers this time.