Adventures at PCMC

Last night was eventful for Mr Social. I think he visited every nurses station on this floor and probably would have went to the others if we had let him.He spent the evening pushing the elevator buttons, cruising around in the car and chatting it up with the ladies.He slept well, except when the nurses came in for vitals or meds, then he would say in his sleepy voice, "Get out!".The poor nutrition and skin thing has really hit home today. With Cole walking around last night, the port hanging off of his IV rubbed his foot with the movement. This has created a monster blister. Not enough good stuff in his body to prevent skin breakdown. He kept crying this morning telling us that his foot hurt, but everything was covered in Keflex, so we couldn't see what he meant. By the way, the IV wasn't patent anymore either. Not surprising with him, but less than a day? Come on! So, once again validation that we are doing the right thing.

We pulled the IV, got tegraderm on the blister and he's back to hitting the halls.Except he is making Daddy carry him since he doesn't want to walk. YET, he is also making him push the cozy car around with them. Wouldn't want to leave it out of his sight (this one has a walkie-talkie and lights on the top) you never know who is going to come looking for one around here ;) Cole has been stealing all of the nurses equipment and even trying to be a part of shift change.We have given our first feeding after a couple of hours of trying to figure out what the heck was going on. *Sending vibes towards the dietitian* He's holding it down well and we're going to try a longer feeding with a pump in an hour or so.Cole is complicated. The diet, Dravet and everything else about him makes him a "hard patient". However, he touches most of the people who work with him and they realize that he is special.