The Ups and the downs

Fridays appointment went great....wonderful in fact....his doctor was thrilled with his progress on eating thru the j tube, she was thrilled with his weight gain and she was thrilled with how much energy he had. She was slightly concerned about how pale he was and that his WBC was elevated but with no fever she sent us on our way...telling Kyle that he had made her whole weekend. Then Saturday came...and we started to have some belly pain....and then Sunday came and the belly pain increased...and then Sunday night I was up with him for a while and Monday was a disaster. After talking to Kyle's dr was backed off a little on the feeds and hoped that it would help....this am was rough but today has been good for the most part. We hit the dr's for a weight check and Kyle had lost weight....major let down. I can't understand it...he's on nutrition 24 hours a day, how could we have lost weight (like how I say we....kills me when he loses...like I somehow could have helped prevent this more)

I hate going from high to low....I know I should be used to it...really it should not hit me so hard but it does..I'm craving normal, and quiet(or loud) I'm craving boring and no TPN.....food...real food for him.....I want to get babysitters and not a nurse when I need a break. (love our nurses....) I want to not have him hooked to a pump 24 hours a day....I want him to not cry when he sees me coming with his TPN...I want him to not have to beg me to be "FREE"

Tomorrow is another day....one that I will be happy to face....but for the next 10 minutes I'm going to allow myself to just feel bad.

XO
K