Things haven't exactly been smooth sailing since coming home. At times, I'm on the brink of taking her in to the ER, but other times, I think she is heading in the right direction. All in all, things appear to be going ok. I hear this recovery is a rough one and in my opinion, after all the drama that happened after her surgery with the PICU, she was discharged a little too quickly. She's still not quite as stable on the feet as she was before. Last week was pretty rough as she was still in a significant amount of pain and we were unable to keep her at a rate of 45cc/hr. We have had to decrease her rate to 30 and we end up removing her altogether during extended periods of pain and bloating. We have yet to see any true improvement in her pain and bloating since the surgery, which is a little depressing, however we also are aware that she is still in recovery so it might be a little while longer.

We were also able to order ferral bags for her. Thsi way we can vent her G continuously and feed her through the J. They haven't come in yet so i'm not sure what our system will be like, but i'm sure we will find one that works.

Last night, she leaked her J feed somehow. I have NO idea how because everything seemed to be very intact and even the tape that we use to keep her med port on her extension shut was pretty clean and dry so I didn't think it could have been from that. Not to mention that the puddle she was laying in was almost dry in the morning so it just kinda happened in the middle of the night and kinda stopped by itself. The extension looks pretty clean... even where the Christmas tree is (she usually likes to pop those out too). I thought maybe she just wasn't moving her food through very well, but when she woke up, her belly was really skinny and not at all bloated, so, in all honesty, I have NO idea what happened. 

Today was her first day back at school in 2.5 weeks. She was so happy to be there, but it took ALOT out of her. She looked down right exhausted the whole 2 hours she was there. Her face was incredibly pale, her lips were very dry and cracking and she looked like she was just going to pass out. (I was there the whole time). Teacher said this is the most off-balance she had ever seen her... which is quite surprising to me because I felt like she wasn't doing too bad. She looked really sick. worse than she did yesterday even. So I was a little concerned and when we left, she said her stomach hurt her really bad and shew as just crying and crying (but it was really skinny, no bloating). I had to go to the Medi-Cal office for some paperwork, which is right across the parking lot so we just walked there and she fell asleep in my arms. She typically doesn't do this unless something is really off. When we got home, she was sleeping, but her nose was bleeding. YIKES, things just don't seem right to me today. She also has not peed at all today. I figure that possibly her altered state of consiousness and lack of pee is from possibly the lost feed, she might have been low on sugar so I started her tube feeding right away. And the bleeding nose is possibly from having too much tylenol round the clock for pain and so I called her GI doc to see if we could get a better pain plan for her. Just waiting on a call back now.

We also have YET to get an appointment set for Dr. Boles. I'm getting really ansy. I feel like if we knew for sure what was going wrong with her, we could avoid problems and I could at least feel much better about fighting for her with a firm diagnosis to stand on. Like right now, I won't take her to the ER unless things are so bad she could die. That's how much faith I have lost in any kind of treatment for her. After the last stay at the hospital, everything that has anything to do with needing to go inpatient is just nightmarish. I might be going a bit overboard with all that, but that's how I feel right now. I feel like because of how she looks on the outside, she is automatically put into a "healthy child" category... one who just doesn't need preventative measures, or whose symptoms don't need to be taken seriously. I swear I was telling that doctor that something was wrong with her and he was telling me that she's fine and looks to be healing nicely... adn that VERY SAME DAY, she crashed hard! She could have died had we not been in the hospital! And THEN, he tries to tell me later that night that he thought it was all anxiety related and that there doesn't appear to be anything wrong with her... as she is barely consious. WHAT!?! And then 10 minutes later there's a huge flurry going on in her room about her being acidotic and hypoglycemic, and hypotensive. I hate you doctor, right now, i really do. Had it not been for your negligence, her recovery might not have been so scary. I really hope Quinn taught that resident a lesson... I really do.


Anyway, i've got a lot on my mind so I've been playing world of warcraft a lot, because it takes  my mind off the stuff I don't want to think about and for right now, that's a good thing.

This is how her belly has been looking, but it goes down if I take her off for a few hours.

 Being a Goof Ball