Surgery #2: Day 6 Post-op

Hi all. Sorry I did not post yesterday. It has been a draining couple of days...and right now I am exhausted so this post won't be too long. I spent part of yesterday (Sat.) afternoon and the Saturday overnight with Avery. She was really mostly upset during the day on Sat. and she only slept 4 hours Sat. night. She is back to doing the back arching/screaming/posturing again. Jon spent the day today with her and she continued in much the same fashion, but actually probably worse. When I got there this evening, she was so mad and just pouring sweat. I thought she had thrown up on Jon...that's how much sweat he had on his shoulder from her. Her hair (what is left) was soaked. I took her and managed to get her calmed down for a bit, but it wasn't for long. She then got going again (I mean really going...nothing I did helped her) and had not stopped by the time my mom arrived for the overnight shift. I have to admit to you all that this is so mentally exhausting for me right now. My nerves are on edge. There is nothing worse than seeing your child in such agony/discomfort/frustration (whichever it is) and feeling helpless to ease that for them. It is nearly more than I can bear right now. I feel like I want to just cry, but I don't think I would be able to stop if I start. I keep thinking, "This can't last forever"...but what if it could? I hope Mom manages to get a little rest tonight. We just don't know what these episodes are all about. We are working her off the pain meds (in case it is a reaction for her to them), have taken her off the laxative (in case it is causing cramping...she is having 2-3 loose BMs daily), have spread her feeds out better over the day to decrease the volume at each feeding (in case her stomach is processing things slower). We keep thinking it must be GI related, but I honestly just don't know. Neurosurgery and neurology keep saying she looks great (and, I can admit, she sure does "look" great!) and that we can probably go home in a day or 2...they need to see her when she is screaming for 3 hours straight and they'd see she is not "doing" great right now! This is not normal and it is not merely her "new" personality...is it? To top it off, she has a red cone shaped patch on the right side of her head just above the ear where her hair is now falling out. No one seems concerned about that either. This happened with the first surgery too...and the doctors then diagnosed it as likely being a stress induced hair loss. I guess that makes sense. It just makes you want to know what is causing such distress to her body. Well, I'm sorry to be a downer, but right now I am having a tough time dealing. Maybe a good nights rest will help...I am off to bed. Please keep praying...we need more strength right now.