What Goes In, Must Come Out

My mom called yesterday for a family update. And of course asked our boy was doing. I told her I wished I could be utterly upbeat, and say wonderful! His tube is GREAT! There are NO problems. In some ways, the above is very true. I LOVE seeing his little face filled out, I love that we can't see his ribs anymore and that he has more energy than we can remember him having. I love knowing he is getting enough calories for the first time in more than a year. I just really hate how complicated adding a g tube makes things. Now when he is throwing up, is it something wrong? Or is it JUST a regular bug? We don't know for sure and adding a tube to the mix means we can't just assume it isn't a big deal, unless the doctor gives us permission to assume so. And the day to day care, which was already a pretty big deal with a 10 year old with no self care skills, got much, much more difficult.
He is getting more in, so more needs to come out. And as most of you know poo rules our lives here at Chez Tangled. Enough that I received an R rating for the excessive use of the word poo in my posts. When you have a kid with low motility in his gut, the egress of the input can sometimes get, um, convoluted.
Yesterday was day two of the boy's clean out regime. We had to get up twice last night, in the middle of the night, mind you, to help him get on the toilet. With most 10 year olds, it wouldn't be a big deal. But for Little Man, it is a big deal. First, he has a triple layered diapering system to try and contain all the fluid output, i.e. pee. And he is hooked up to a feeding pump on a pole, and his feeding extenstion is pinned to the inside of his jammies. So helping him involves taking everything off, and dragging the pole into the bathroom, doing the necessary cleanup after and then repeating the whole process the other direction. Which means we actually got him ready for bed three times last night. Once was more than enough. Three times is beyond excessive, it borders on inhumane. I am tired today. I am grumpy today. Bald Man is the same. Tired and grumpy. Little Man is being pretty horrid with his behaviors today and we are just not in the best of places to deal with it very well. And I guess that is all I want to say. Just, life is complicated. There are places in here where I am beyond grateful, I just wish some of the blessings came with fewer, less smelly um, "complications". And more sleep. Yes, we need more sleep.