I am back, since I am staying at the hospital I don't have much to do here. Adriana loves to just sleep, so what do I do. I spoke to the doctor she kind of just went over Adriana's test results. She has been pre evaluated for a transplant and so they had to run many exams on her. I was told they did not measure how much bowel she has but they are just going with what the surgeon said. Which is about 45cm of small. I know it is not much but we will see what we can do with it. Well Adriana is not yet receiving omegaven but the doctor told me that the NP that is in charge of that has been talking to CCS, and they might have an answer for us today. All I know is they need to hurry I thought she was going to get it along time ago but I guess it doesn't work that way here. The home health company has been coming by daily showing me how to do work the pumps, and do the tubing. It is fairly easy like everyone was telling me. Adriana will be discharged soon, we do not have a date yet because Ronald McDonald house is full and we are on the waiting list.They want me to go there for a few days so I have the feel of things and feel very comfortable that I can do everything myself. I realized today that it is alot I have to learn and do for her at home. Her broviac care,ostomy care,feeding pumps,NG care,TPN care and last but not least the regular baby care. It seems like alot but the only thing I would be doing daily is her TPN, lipids and feeds. When Adriana goes home we will work on trying to go up on her feeds slowly and we will also try to cycle her off TPN for a while to see if she tolerates it. We failed at it yesterday so I will also be taking home one of those machines that reads your blood sugars after you poke your finger. I would only use it in case of an emergency and I needed to check her sugars. I guess I will just accommodate everything to fit Adriana's needs at home. I thought being a mom was hard, but being a mom to a child with special needs is alot harder. I will keep you updated when I get a chance to sneak away from Adriana. I will also be adding pictures of Adriana when I get home. I am not able to add them here because the computer does not let me.

Adriana is doing well. We are still on the waiting list for a room at the RonaldMcdonald house, so we could be discharged from the hospital. We finally finished evaluatng Adriana for a transplant. I am not sure of any results yet but the doctor told me she would be by today to let me know what they are. They tried to cycle Adriana yesterday for 2 hours but of course her blood sugars went down. They were at 62 the first time and then went down to 39, the doctors werent so excited about that. They restarted her TPN right away and checked her sugard again. They then came up and she was fine, while her sugars were low she was not acting any different, she looked fine but they were worried she might go into shock, Well Adriana is not yet on omgaven we are stil waiting for an answer from the insurance but hopefully we get one today. So I am learning how to take care of her at home, the home health care comes almost every day to show me how to hook her up and how to use the pumps. They are not as hard as I thought. Well I will keep everyone updated as we get farther down the week. Hopefully next time I update you guys I will have the good news that Adriana has started omegaven let's just see.