Sunday, April 17, 2011
We are HOME!
Aubree was sent home on Thursday this week. She was able to keep down her oral medications and her platelets were holding on so she only needs to be transfused twice a week, and she wasn't throwing up all the time, only some of the time. So they said she was good enough to go home. It has been great being home, and I think Aubree loves being home with her family. When she first came home and saw Aundrea all she wanted to do was be right next to her and pat her. She loves to play with them, or just watch them play together. It has been very busy for me and my mom. What took a small army at the hospital to take care of Aubree, now falls on us. There are specific things we have to do each day to clean and once a week, like wall washing. There are also very specific ways in which we have to prepare her food. We have to act kind of like we are in a third world country with everything that we prepare or buy. We have to wash all of our fruits and vegis in bleach water before putting them away, she cant eat berries of any kind, or leafy veggies. She also came home on TPN and lipids, this is her venous nutrition, I have to get it ready and then also access her central line, she is on it for 15 hours a day. She is also on a feeding tube, and I have to take care of that also. She is on 15 oral medications most are given twice a day and some are given three times a day. She has a little back pack that she carries around with her that has her three pumps in it, along with her feeds, and TPN and lipids. She still throws up three to four times a day, mostly at night. She has a cold and the mucus from the cold makes her chock and gag and then throws up. We really hope that sometime soon her cold will get better, but it could take months for her to get better because her body doesn't have the ability to fight a cold.