But here we are.
It turns out that Patrick’s large intestine is needing much more time to adapt than was anticipated. The problem is that, never having been used, first it had to wake up, and then it has to stretch back to a normal size.
They did a contrast enema today. That means they squirted contrast in Patrick’s bottom and then watched on X-ray as it moved up through his large intestine, and then his small intestine.
The good news is that it moved through without problems. There are no obstructions or strictures. The bad news is that, well, it still resembles a long noodle more than a colon. And it’s fitted to a small intestine that is quite stretched out.
So the stretched out, and therefore weaker, small intestine is trying to push things through a super tight large intestine (imagine a balloon that hasn’t yet been inflated). And it’s just not working very well.
I’ll talk to Patrick’s surgeon tomorrow about the study and see if there is anything more that can be done. So far, though, the answer I’m given most often is that we just need to wait. Hopefully time and use will balance things out.
In the meantime, we just keep waiting here. I don’t know quite what to do with myself. Without feeding, ostomy, IV’s (I’m not allowed to touch them), or even diapers really, there isn’t much in the way of my normal nursing duties to do. So I’m trying to spend my time just being a mom… playing with Patrick and helping with the basic things like sleep, comfort, and cuddles.
The good news is that Patrick actually feels quite well, as long as we don’t let too much build up in his stomach. And this lends itself to fun new adventures like baths in a bathtub and learning to sit.
It’s not the easiest thing being cooped up in this tiny crowded room together with nurses going in and out all the time. We get a bit bored of each other sometimes. But we’re doing the best we can and just praying that Patrick’s body is up for the challenge it’s been given.