Update first!!
Yesterday (Saturday) was horrible. Peanuts gj-tube came out and after it was put back in (in the end, it was in the wrong spot), it broke in half - yes, her tube broke in half. The only thing keeping it attached, was is the internal thread. So bile was leaking out, for hours. In the end, they had to monkey rig it, just to keep the bile from leaking out. It can't be used. So no feeds, and most of her meds she can't get. 2 of them she already took orally, and one of them she has to (it was normally given through her tube) take orally as its an antibiotic (which she hates). The rest have been discontinue until her tube is replace (meds she needs, I should add). We are hoping they will dilate her tract and replace the tube tomorrow (Monday). We'll find out in the morning - fingers crossed. She was in SO much pain when the tube came out, and when they were pushing it back in. It was so hard to see. She was so uncomfortable the rest of the day because of how much manipulating of the tube they had to do, and because of how its curled inside of her.
They are also having trouble with her blood sugar, as it keeps dropping too low. Juice is helping as a temporary measure, but they are adding more dextrose to her TPN today to try and regulate it. They also took off her stat lock today that holds her gj-tube in place (she was reacting so badly to it, and since its not being used they can get away with some tape to hold it in place), and her stomach is just torn up.
She is SO itchy and sore, its fire red. So they started her on a topical steroid to try and clear it up, but man. The poor thing cannot catch a break. Thus far, she has gained nothing.
Which is utterly frustrating. We are hoping the new week, brings some progress and comfort for Peanut. She is really having a tough time in isolation, so the sooner we can get things on track, the sooner we can get her home.
Ohh no
I am so sorry she is suffering right now. I am thankful she was in the hospital at the time.
Hope tomorrow is a smooth one and things go well on monday.
Avy was awake when they did hers and they didn't give her any pain meds 
Her tube fell out overnight so we had to stretch her from a 10 to a 14. Talk about screaming. She was in pain for days I could tell
How are you liking the I-pad?
Thank you.
No ipad.
We are making due but I can't really post from my ipod or phone, its just too hard. I can read, but even then its a little difficult. So I just don't.
Before I forget, YAY on getting some dates. When will you find out if they are confirmed? Have you said anything to the kids? I'm SO excited for you guys.
I can't believe they didn't give Avy anything.
Its shocking. Does she had a g-tube, or a gj-tube? I know with a gj-tube, its more of a complicated process to get it in place (it goes in the jejenum rather then the stomach), but still. I would think dilating and changing out tubes is not the most comfortable thing. Peanuts Dr refuses to let it get done unless they medicate her first. I'm sorry Avy had to go through that. It makes me sad that they hurt her like that.
I aam so sorry that you are going through this...I know all to well how weight is so important. We have been going through this for 3 years in and out of the hospital to address this very thing. Needless to say that every ounce gained or lost just sends me into a tizzy!! (My Eva is 3 she is 34 inches tall and weighs only 24 1/2 lbs) My DD has the Mic-Key and I love it...It is better for dear Eva who has dislodged every tube ever inserted into her, including her G/J tube
I pray that things go smoothly and Peanut is back to herself very soon!! I will also keep you in prayer because I know all too well how hard it is to be away from home....try to take a few minutes of the day just for YOU!!! Momma needs to be at her best too!!
We were originally told that we were unable to get a mic-key for Peanut as they couldn't get one smaller then a 16. Who knows if its hospital issues, or what, but ours claims they can get it. They could get it in a 12 (which is currently the size of Peanuts tract), but 14 would be best, so they are going to dilate her up. I guess it all remains to be seen when she gets the procedure done. I really hope we have luck with the mic-key, her body is just so sensitive to most tapes and having them on there so much - or simply just changing them so frequently, it just tears up her poor belly.
Thank you for the prayers and thoughts.
Its just so draining for everyone having her in the hospital. She needs this though, so we will endure it with her and for her.
I just want to send you some
I hope things start get easier for the hospital stay. I will be thinking of Peanut and your family.
Thank you, it means a lot.
Good to hear that the Big Gives brought your kids some much-deserved sunshine! Sorry to hear that you guys are having such a rough time of it. Here's hoping the procedure goes smoothly and Peanut doesn't suffer too much pain--and that she gains some weight!
Thinking of you guys....
Yes, it certainly did. They love getting mail, they must take after me. lol. And thank you for your kind words. We are all hoping the same thing you are.
I'm so srry that your time in the hospital has been so hard. I'll be praying that things get easier and Peanut is as comfortable as possible for the remainder of your stay.
Thank you for your kind words.
I hope things start to get easier too, its hard to be so strong for your child, when you are utterly frustrated. We aren't frustrated at anyone, just the situation.
No bothers. Glad they liked them
YES YES YES, THANK YOU!!!
I'll have to tell her that after she gets it. Yes, those ponies finally decided to ask directions, they must be male. 
No need to appologize, her reaction was too funny when she realized there were no Minnies. You would have laughed to see her facial expression and the tone of her voice. 
just glad it finally got there!
Sorry to hear that you guys are having such a rough time of it. Here's hoping the procedure goes smoothly and Peanut doesn't suffer too much pain--and that she gains some weight! 
It only took 5 days. 
Can't wait to see all the Big Gives 
