oh wow...it has been basically the worst few days ever...but i really think the doctor made things seem so much worse, or maybe im retarded, or everyone is, who knows...but yesterday, the dr called again to tell me that he didnt think my kid would ever breathe on his own, and that intubation was imminent, and honestly everything went black because i came unfuckingglued at the moment...
4 hours later, the nurse tells me that hes looking at lights and is awake. so then im like how?? his dr just told me hes unresponsive to even painful stimuli?? ugh. anyway, we go up last night to the icu, and i brought all his toys and whatever...i put air pods in his ears and turned on some music, and he literally opened his eyes and pointed at me!!
and this morning, they were able to take him off this bi-pap and hes on low flow oxygen. this whole thing is so fucking weird, apparently he was septic from having caught c-diff, which i thought was like an institutional illness, but i guess not..but apparently he was so overwhelmed by it that it damn near killed him that night we took him in.
he wasnt even running a fever though. scary. anyway thank you for for your kind words, seriously i appreciate it so much, this has been so bad, and im hoping we can pull through this..oh and the doctor also told me, preemptively that he thought he had HEART FAILURE based on the ekg...his heart is fine. they did an echo and its normal. and the MRI was also normal, except for changes consistent with LGS.
the neurologist was a very nice man, but i wish he wouldve like held his thought until the real tests came back, because i couldve lived without thinking my kid was about to die at that moment, for real.
anyway, you guys are so sweet, thank you again....so much for the assholes who claim kf'ers are all evil stalkers or whatever nonsense. i think the majority of us here are honestly pretty amazing.
