I'm going to bed tonight so emotionally, mentally, and physically exhausted. I'm frustrated. I'm annoyed. I'm short tempered. I'm heartbroken. I'm burnt out. I'm tired of arguing with doctors and nurses about 'how we should do this or that' in caring for J. He has a strict plan made up by me, his advocates here, and his medical team STICK TO IT. His labs today showed higher inflammatory markers more than they did on the 13th. He spikes fevers 104 and higher and his O2 drops. He doesn't normally need oxygen at home like he has been here. So, I'm also confused because the amounts of different antibiotics he has had is A LOT. He is literally in SO much pain he still isn't walking. We are still carrying him around. Doing cares, baths, clothe changes, even cuddling, he yells out in pain. And nobody knows why. Jamison is normally one of the happiest, most joy filled kids ever! I fell into a ball and just sobbed in front of the nurse after doing another care and him saying 'owie mommy stop hurting me'. I told her she could do it. And the doctors and anyone other than me because this isn't right or fair or 'our normal'. HEARTBROKEN. There have been so many things that have NOT been ok whatsoever over the last few days. I love him so much that it kills me that he is in so much pain that they don't seem to give a shit. (Sorry, I'm pissed.) Pray for pain relief for him, please. #heartbroken #mymamahearthurts #mypoorboy #imnotokay #feelinghelpless #somanytears #godpleasehelp