Update

surgery went excellent. He said he had reservations doing it because of how bad her bowels were anticipated to be but he was surprised that they looked wonderfully. He did the surgery with no complications and she only lost like a tablespoon of blood. She has a 2" cut over her belly button and then the new button as well. Both buttons were replaced with much smaller low profile buttons which I'm in love with already. Her GJ was huge!

She normally has a hard time with anesthesia so we warned them. She normally is violent, requires 4 people to restrain her after, vomits non stop for hours and shakes and sweats uncontrollably. This has happened with every type of sedation they've done.

He found out they are working her up for mitochondrial disease so he said he would do the "mitochondrial protocol" which is different drugs and fluids for those types of kids. It worked wonderfully. Neither of us had to go in recovery, she was silent and peaceful when we got to her up in her room, didn't vomit at all and just kept saying "I did it mommy. I got my two buttons and I didn't even cry" What a sweet girl

About an hour after getting up there she began to vomit and have a lot of pain and required morphine almost every hour but I just called and she has gone two hours now and only gotten Toradol and some nausea meds.

She holds her urine for like 24 hours so we wanted to make sure she didn't do that and kept encouraging her to just pee in a diaper since we knew she wouldn't walk. Well low and behold, she was going to prove us wrong and has already been up to the bathroom. She takes a few steps and then needs to be carried but that's a great sign! Her G tube was a nightmare surgery so I'm glad this is going better. She already wants to go for a walk

They restarted her TPN and she'll be on that 24/7 for 3 days and then they will try to start feeds. We are hoping for the best. There are no guarantees this will even work but it's the only option we had left. I hate hate hate that she now has two holes and a scar in her belly but I know when she's older she will understand why we did it.

So she's just laying there curled up listening to her Fisher Price Aquarium (she's OBSESSED with that thing) and holding her Woody doll and trying to be all sweet. I love that little girl She has the nurses so wrapped around her fingers. In recovery she told a nursing student, "I need you to rub my back before I start to cry" and gave her a pouty face and she jumped right on that

SO that's our update. Our recovery thus far is 1000 times better than her G tube and even any other surgery she's had. I hope and pray she'll bounce back

Thank you for all your prayers and positive thoughts!!!!