Going home for GOOD tomorrow!

Avarie came back to the hospital Friday morning after Christmas to start chemo. Craig was suppose to stay with her through Sunday afternoon and then after church I was going to switch out with him and stay until she was discharged. Avarie had other plans. She was not happy about mommy leaving and she made sure Daddy and the nurses knew it. She was hysterical all night and through Saturday morning. They tried to calm her with some adavan and Benedryl but it just wasn't working. So I switched out early and come Saturday afternoon. I guess she just needed her mommy because she has been ok ever since. It makes me feel good to know that she wants me and loves me because she has a hard time showing that right now. But at the same time I was really looking forward to doing a little more cleaning around the house and going to church Sunday morning. Oh well the cleaning will still be there when we go home tomorrow, it just may be a little more difficult to get to it. We have the kids staying the night at Craig's parents until Wednesday afternoon so that we can get Avarie home and set up and Craig has to work Tuesday night. There is just no way I can take care of Avarie and the other kids on my own. At least not right now, hopefully as I become more comfortable with the meds and wound care things I will become more familiar and confident with everything.
She will finish chemo in the morning and then we will be headed home. Her counts will start to go down in the next few days and by this weekend they should be pretty bad. We are coming back on Friday for a check up. I am keeping a bag packed in my car from now on so that I will be prepared if and when we have to stay again. I have been here long enough to watch how the other family's routine seems to go. They are in and out a lot, usually they are only here for a couple of days at a time and then home for a week or two and then back in for a couple days. I just hope we can fall into that routine instead of the one we have been in.
I talked with the infectious disease control Dr today. He is still pretty skeptical about Avarie having Sweet Syndrome. He says it is just so rare, he has a hard time believing that she could have it, and her presentation has not been typical for Sweet Syndrome. He still feels that it is yeast. But our Oncologist/Hemotologists feel differently. They are encouraged by her improvement since she has started the new medicines. They also point out that if it had been a yeast infection they feel two things would have happened, one her blood cultures that they took everyday would have grown something and two that with all of the intense antibiotics and antifungals that she was on she would not have continued to have breakouts. I did not get a chance to explore that more with the infectious disease control Dr. We all feel pretty strongly that this next week will give us some answers. When her counts go low if it is yeast of some other type of fungal then we should see it spread again. If it is Sweet Syndrome then we should see it continue to improve with the new med and steroids that she is on. Oh yes, she is on steroids again and this time she is actually reacting to them the way we had expected. She is incredibly hungry and finally eating, a lot. We are expecting to take her of TPN tomorrow, that is her feeds that go into her vein. We will continue with the feeds through her nose for now until her nutrition is more stabalized. We tried moving her feeds from through her nose tube to her stomach tube today, that didn't go so well. She is eating a lot and so with the food and the feeds all going into her stomach it was just a little too much for her tummy to try to handle and her tummy became soar and hard. We then moved her feeds back through her nose. The nose tube bypasses the stomach and goes directly into the intestines so that her stomach does not have to try to handle the feeds. She is now a lot more comfortable.
On my Christmas post I neglected to thank all of the people that helped to make our Christmas wonderful. There were many wonderful people that went above and beyond to make our Christmas a happy one and we are so grateful for all of their sacrfice and kindness. It was a wonderful Christmas and there is just no way that we would have had such a fun Christmas if it wasn't for so many wonderful people. Thank you all so much.
I will update once we are home tomorrow and settled. Hopefully it will all go well and hopefully I will be able to get a little cleaning done when Avarie naps or then again perhaps I will nap too.