Recently Joshua has shown lots of interest in potty-training. To all our surprise, things are going quite well. Watching as he beams with pride, my heart just breaks. The extent of his chronic digestive issues are so much more evident when not contained in a diaper. It never quite hit home until the first time I witnessed it. But, Joshua just as pleased as can be, loves the independence. Then comes bedtime. Four times last night between 9:00 pm and 12:30 am he calls me in the room so he could go potty. So we begin the process of turning off TPN and Lipid pumps, sterilely securing the end of his tubing. Turning off his feeding pump and unhooking tubing at the g-button. He scoots down off the bed, heads to the bathroom and pretty much takes care of things all by himself. He cleans his hands, puts his pull-ups back on, and gets back into bed. I clean off his end of the central line, re-connect the TPN and Lipid tubing, and reset the pumps. I reconnect his feeding tubing and turn his feeding pump back on. This is all well and good, until an hour later when we repeat the whole process. And then an hour after that. And then once more. What to do? I certainly can't discourage him using the restroom. But I have to wonder, how much of this is in his control?
Who knew poop could run someone's life!?! I'm desperately in need of sleep!