its been an interesting 24 hours. last night after our walk out with saylor we discovered that saylor's stomach was more swollen and then that she was arching her back. upon arrival back to her room we realized that she was distended and full of gas. she was exhausted and went to sleep though, still arching her back. it didnt take long for pain to kick in at her neck and hip because of the way she was holding herself to compensate for the pain. then trouble started and i became really frustrated with saylors pain managment. it was really hard to see her hurt that bad and have nothing to help her with. the nurses kept calling the residents who kept frustrating me more and then i started falling emotionally apart as saylor was falling physically apart. the color that had come back to her and quickly left and she looked very ill again. nate had gone home to gear up with clean clothes and work clothes for the week but i called him at 4am and made him come back. i usually am the feisty one with the docs but i just didnt have it in me. good thing nate did. when he arrived he insisted on actually speaking to the resident. he stayed calm but firm. then within 15 minutes another resident walked in and we peacefully resolved the issues and came up with a care plan to address saylors needs. yesterday was her first day on clear liquid diet ... obviously her digestive system was not ready so we had to take a step back and come off it. after she finally got some sleep early this morning i got her up and into the rocking chair sitting up for a bit where she informed me, liz, and kathy that it hurts when she farts. great news ... its coming back. when i lifted her back into bed she pooped ... YEAH its coming out! she is also off her morphine and on some other meds. within a matter of hours her color was better then ever, she was happier and more conversative then she has been all week. totally different child in a matter of hours. so crazy! she even was nice to dr wallis, he was shocked! i feel much more at peace.
i owe a better mood & spirit of my own to my good friends liz & kathy. you have touched me deeply with your generosity and kind gifts to get me through. talking today did more for me than you two will ever know... thank you.
saylor's grandma gayla & bill also brought smiles, cheers, and love today. followed by my sweet older sister jessica and uncle aaron. all of you have kept the lonely feelings without nate away and me focused on other things. sorry i am so grimmy and saturated looking.