Well, we were discharged yesterday. I've just been busy. The doc kept asking me if we were ready to go home and I kept telling her that I thought her stomach was having a hard time, which is typical for Q, but I still was hopeful that we would be able to get her better treated, but no.Everytime i talked to the doc about it, she seemed to not care, said to just kep giving her mirilax and that she will poop. Well, she kept getting big tummy and the doc kept saying that she has normal bowel sounds and that since it decompresses everytime i vent her, she is fine. So the nurse mentioned to me about the ferral bags and told me to ask the doc about it. When i asked her about it, she made me feel like I was asking for too much and said that if she is on CCS, then her GI doc can order them but that she couldn't do it because she wasn't a CCS doctor. She said that stuff like that is like a special type of treatment for children... hmmm... So she kept asking me if i was comfortable to go home and I kept telling her that I thought her bowels weren't and she kept asking me what I wanted to do to help her and I was like... ummm you are the frickin DOCTOR! I was so done arguing with her and knew that her bowels weren't exactly stable but I just wanted to go home at this point because they were doing nothing for her in there that I couldn't do for her here. So i'm just gonna watch her.


she had a low grade fever yesterday and came home screaming looking like a pregnant toddler, but she finally started pooping and she pooped a lot. Lots of fluffy diarrhea. She was still bloating up a lot everytime i fed her so i just held her formula feed last night and seems to be so much happier today. Fever is gone thank goodness. We will start back up with our daily routine today.


I have vowed never to go back to that hospital for any kind of "observation" unless she is under the care of her GI doc or her surgeon. I feel like I can observe her at home and I can give her tylenol if she has a fever. they didn't even take her blood or culture her urine. Q was very thirsty on the day she got a fever, was bloating up really badly and was peeing brown, but they said there is no way she is dehydrated because she was drinking a lot. ummm... that makes no sense. if her stomach is not working properly, of course she can still be dehydrated.


When I asked for her new discharge paper, they said that all they did was activate the last discharge paper and a new one was not typed out, so basically, there's no true documentation of Saturday's hospital day. Of her fever, of her being on o2, of her heartrate, it just says that she was completely stable for the course of her stay and that she had no complications. all they changed was the date.


I often wonder if this will ever get any easier and I also wonder if we just need to change hospitals to get a clean slate. I'm not sure if maybe I'm flagged as an over paranoid mother or what... but that's the reason I started documenting EVERYTHING!!!! EVERYTHING that i know is out of the norm, i pop out my video phone and start recording. Sometimes I feel like i'm going to go insane, I hate that I have to push for treatment for Quinn and I am pretty certain that her outward appearance takes a  front seat to how the inside of her body is behaving.


All I know is that I won't be going back to that hospital unless she is deathly ill... and obviously for her surgery but I definitely won't fight them on any treatment i'll jsut let them do what they need to do and high-tail it out of there as soon as they let us leave.


This how she was the whole way home from the hospital

How her belly looked at discharge (doc said it was soft and non-distended... lol! )