Today has been a little rough for Coop. He has had quite a few storms despite the increase in clonadine. Now he is almost at the maximum dose clonadine so the team has decided to add propranolol (beta blocker). He had one storm that started at noon (after receiving clonadine) and it didn’t stop with any medications including ativan and morphine. Then after he received his next clonadine dose at 4:00 he totally mellowed out. Go figure… Dr. Harlan (the new attending doctor) discussed treatment with rehab and the plan is to go ahead with the shunt surgery on Monday and hold off doing any sort of feeding tube surgery for a while. The thought being that in a week or two we will have a better idea of his gag reflex and hopefully have the storming under better control. If they put a tube in his abdomen now and he continues to arch his back like he does during storms it will not allow the area to heal. Charlie is still pretty sick so the prediction is that we will be here at least a couple more weeks if all goes smoothly. He has also completely wiggled himself out of his left cast again. Janine from physical therapy came by to see our little man and said we should leave it off for a little bit and see if he is less agitated. We may try a splint similar to the wrists that can be removed if necessary. Janine has the magic touch with Charlie as she calms him down everytime she comes. I need lessons.