Nothing too new to update, what can I say it's the weekend. Yesterday Danny had a good day and in the evening I climbed in bed with him and we watched Finding Nemo :). By midnight though his episodes presented themselves once again :(. Right away this morning he had another one but unfortunately the normal protocol they were using to treat these storms didn't turn his system down so they had to add yet another med. Due to the new onset of episodes which have spiked his fevers to 102 twice (resulting in packing him on ice, yikes) in the last 12 hours they did more labs and cultures to make sure we are not missing anything.
I am happy to report the urine culture is clear, and we check that off the list of possiblities. His first blood culture finally grew out one of the bugs in his blood stream, but not the species of it (multiple kinds). It took forever to get the culprit as it is a very rare infection. I'm not sure how he got it, but hoping we'll get a better idea once we know the species. The thought on the other bug (remember he had 2 showing up in The preliminary) is that it's being masked by this rare bug or it's already gone as they can not get it to grow out completely. We'll have to see if it grows in any of the other 4 cultures that have been done in the last few days. I'm going to assume it's going to take just as long to get any answers from those cultures too. Other then sepsis which they believe we're going in the right track of beating the infection, Danny continues to keep them guessing with his labs bouncing all over the place. Today's issues are his liver and pancreas numbers have elevated again, but his CPR has gone down - remember it's then weekend and unless you are coding you won't get much of a report/reply from the doctors. We'll have to see if I can track one down in the hallway and get their thoughts, if they have any. I have contacted Dr K back at home and he's going to pull the latest labs n reports and see if he can figure out what's going on. Pretty sad when he has to look things up 90 miles away on his day off and get back to me when I'm sitting in a hospital full of doctors. Just goes to show how amazing our pediatrician is and how important he is in Danny's life. He really is NOT replaceable, I don't know where we would be today without him in our corner.
Tomorrow we'll have his dysautonomia dr paged to have him give us a better protocol to help treat these episodes now during his current illness and also for when we go home. Most of the meds they are giving him is via his line so we'll have to see if they can be transferred to an oral med or if we'll need to keep his port accessed.
Thanks for the continued out pouring support. This is becoming a slow process but steady and slow WILL win the race.
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