Preparing for Home

Avarie thought she was so funny in these pictures. Grandma Foushee brought her some ornaments shaped like snowflakes that had the cutest little saying on them and Avarie decided to make them into earings and wear then. She was very silly that day. She stuck her finger up her nose and then laughed so hard at herself. It was so funny to see her do something like that, I had to take a picture of it and post it. Sorry if anyone finds it gross.It was on Thursday when she was feeling really good.


The Dr's are moving ahead with their plans for Avarie to come home on Monday. Although I am concerned about the weather. If it doesn't let up I am not sure we will be able to get her home. For anyone reading this that is not in the Portland Metro Area, we are experiencing an "Arctic Blast". That is what the news stations keep calling it. We have over 8 inches of snow on the ground right now and freezing rain is just moving in to the area and we are expected to get anywhere from 1/4 inch - 1/2 inch thick of ice covering the ground when the freezing rain is all done and then we are expected to get more snow on top of that for the next several days. AAHHHHHHH!!!!!!! I want to bring my baby home. We have studded tires on our van, but I don't think that will do much on those kinds of streets. My brother has a 4x4 with chains, and has offered to help, but honestly I am concerned about that. Avarie has enough problems, I don't want to put a car wreck on top of it. Some how this will all get figured out and we will get her home.
I was lucky enough to get out this morning quickly so I could pick up a couple of things that we are going to need for her at home, like diapers and pillow covers.
She will be coming home with a lot of machines. There are home health nurses that will be coming and teaching us how to use the machines and administer her medications on Monday (if they can get through). They are suppose to actually be going to the hospital to teach us but I don't know if we are taking the machines home with us from there or if they are delivering them to our house, that part was a little confusing.
Avarie will have to go back into the hospital on Friday for her next round of chemo. This round is a 4-5 day stay and then as long as she is doing ok and there are no new infections we can take her home again. I was at the hospital long enough to see how other peoples routines go and I realize that we will be spending a lot more time there then I had hoped. I see certain families coming and going a lot. It just takes the simplest of fevers or viruses to put us back in there.
On Friday Avarie had the endoscopy and they did find some erosion of the stomach lining, which is basically some pre-ulcers. The only thing they can do for that is to put her on Prilosec for the stomach acid. If anything the throwing up has probably caused the erosion and not the erosion causing the throwing up. So we still don't have any answers as to why for the last 2 1/2 weeks she throws up everyday, usually 2-3 times a day. It doesn't matter if she is eating or not, she can go days without food on her stomach and she still throws up. I'm frustrated to not have an answer to this one, but I know she is only home for a few days, so we can address it again at the hospital this next week if the problem is still there.
They also put in the "button" on Friday. That is a feeding tube that goes directly into her stomach through the outside of her stomach rather than down her nose. She still has the one in her nose for now because they made that one go longer then her stomach. Instead of the one through her nose ending in her stomach and feeding her stomach it goes through her stomach into her intestines and puts the food directly in there. They were hoping that it would ease the irritation on her stomach lining and hopefully help her not throw up any more, so far that has not been the case, but it was worth a try.
This little video of Avarie was from Thursday night when she had such a great night. The video was from the end of night as she had started to settle down a little, but she was still happy. She was doing so good that night, but having the "button" put in on Friday has set her back a little right now, but I now know that she is still in there. Avarie is still inside that sick little body. We have upped her pain medicine to help her feel better. Having her do so well that night that she was "overdosed" a little on Fentanyl helped us see that we have not been giving her enough to help her completely recover. She is now on more and as she recovers from the "button" procedure she will emerge again. Anytime she has a procedure done she emotionally shuts down for awhile.