New Updates On Trinity

Hello all again. Sorry I haven't blogged for a few days. Things got crazy up at OHSU. Well as of right now we are home. I had to fight the Dr's. tooth and nail cause they didn't think that I had enough support at home and were worried about me doing majority of the work with Trinity. I am ok with it and am going to have all the help from friends and family I need I told them. Today in 1 hr time I got told 2x yes I was going home and then 2x no I wasn't. I got lucky today at 3pm and saw my liver Dr. passing my room. I stopped her and let her know that I was upset and I really just wanted to go home today, since that is what she told me on Saturday. She said the same as I mentioned above about having help and I told her that I was ok with everything. She talked to the team and then let me go home... after talking with a social worker and making sure everything was good at home! I then finished my conversation with the guy that helped me with the machine for at home feedings. He was a really nice man, and explained things really well and that made me feel comfortable with me going home even more. Well for the time being she is in the front room in her pack and play and she is getting her feedings by the machine. She is fast asleep and doing well. Tonight though Donny and I had to change her face dressing so it can keep the tube tight to her face so she can move her head with out her moving the tube. As for now all she has for the machine is 12 hr night feedings and then can be bottle fed during the day. On Friday I go into Carlton to the local Dr's. office to get her weighed . Next Thurdsay I then go at 9:30 am to my regular primary care physician's office to just make sure that her belly is not gaining any more fluid or distending and also to get her weight. Then the next week I go into OHSU and see the people that are comming up to there from Stanford University to just do a day clinic and I have no idea what time it is going to be for they are going to schedual it and call me with the time. Then after that ... the people at Stanford University are going to schedual me to fly down there for the Pre-Op ect ect.... So anyways that is that and we will see what tomarrow brings. Oh and just by the way the only reason she has the Ng tube is because of nutritinal reasons and for her to put on some more weight faster.!
God Bless

Chantel R. Conn