melanie had a really rough morning. very, very out of sorts, not wanting anyone around, anyone to talk, anyone to touch her; obviously dealing with more than usual pain. it was miserable for everyone. finally, around 11, it seemed that her pain meds kicked in (she had gotten them a little later than usual because she was in the shower--it was port reaccess and ostomy change day). the difference is night and day. when she is "just" dealing with her baseline pain she is interactive and sweet. when the pain is more than she can handle her demeanor and personality are completely different, and she will not accept any kind of comfort in the form of rubbing her back or a hug or a kiss on the head. tonight she had a piece of gum that she said was hurting her tummy. it was at a level of pain that she was able to come to me, tell me her tummy hurt, and accept a hug from me (when her pain is out of control she will NOT tell us where it hurts). we have a pain scale with faces on it; and that level of pain she pointed to as a level 6. this afternoon she was able to tell me that in the morning her tummy was hurting and it was a level 10. sure wish she didn't have to know level 10 pain! urine culture came back negative today which is good but also means that is not something contributing to her pain--so nothing we can treat to make her pain any better.
her nose was running most of the day, and she's coughing more now that it's night; but she's doing well with the cold so far. i do have her on blow-by oxygen tonight just so her body doesn't have to work as hard. her heart rate is higher than usual; so i know it's working harder to keep her SATS up.
brandon comes home tomorrow! i am so ready to give him a great big hug and hear all about his week (though he does not share much of what he does at school, and i'm wondering if he will tell us much about camp). today melanie mentioned that she was so excited that brandon comes home tomorrow!
pictures of melanie in grandpa's air conditioned truck at the parade:
melanie getting an ECG:
brandon ready to go to kids camp:
melanie playing the princess game she got for her birthday:
melanie likes to walk chocolate in the house:
melanie loves chocolate so much:
a girl and her dog:
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