I have to say that being home is really crazy. It takes so many people to do what was done in the hospital. I have two of my sisters coming up every week to clean, my mom is here everyday cleaning, my dad comes a couple of times a week to clean and my ward sends people over once a week to clean. (my ward has been awsome, all 6 months that we were in the hospital they brought meals three times a week over, now they are helping me clean. AMAZING!) I am in charge of Aubree's care and cooking, but my mom still does all the grocery shopping and cleaning of the food before she puts it away. My oldest sister came and took my kids to sleep over at her house one night last week to give me a break of taking care of all of this and my two other children. I am amazed that people do this all the time, there are many children who have their chemo at home the whole time, and their parents do this, you people amaze me.
Aubree is doing good, we have been able to up her feeds to 20 mils an hour, she does not throw up during the day to much anymore, if she does its usually just mucus from her cold. During the night she is still throwing up quit a bit, and last night I dont think she kept any food down. I am convinced that its the TPN and lipids. I think her body can only handle one type of nutrition at once. Two nights ago I did not give her the TPN and lipids and it was night and day. She threw up once, but it was hardly anything. I didnt give her TPN because she had a line break. It was her first line break and I thought that we were going to be able to make it without one. But no such luck. We went in to have it fixed and it wasnt working really well. It had clotted off, so they put TPA in her line, a product to help declot her line. She had to keep it in over night and we went in yesterday to see what was going on. If her line didnt unclot we were looking at surgery to replace her line if it didnt declot. But we were able to go in and they did another repair on the line and one side was working, I am waiting for home health to come and declot her other line. I dont think that they will take her to surgery if she at least has one line working. The bad thing is that the line that works in the line they can not draw a certain lab out of, so she would have to be stuck every time we went into clinic so they could get an accurate level of the drug in her body. Horrible if you ask me, its the one advatage of having the line in the first place. Other than that she is doing so good, she loves being home, she loves being with Aundrea and Nelson. She is starting to crawl to try to keep up with them, but she is very slow. They have to be really close for her to try or she has to really want something to crawl to get it. I feel as though I am rambling, it could be lack of sleep, so I am going to end here.