As I may or may not have mentioned in the past, bowel and bladder issues are common to people with spina bifida, no matter what level their lesion was. Oli is an L4/L5, which means that all sensation below the 4/5 lumbar is damaged from when his spine developed outside of his body in utero. Essentially, the nerves that control his bladder and bowel just dont' work. This can manifest differently in different people; lots of people with spina bifida cannot empty their bladder on their own, so they have to catheterize every few hours. Thank God we escaped that; we had to do if for a few day in the NICU when he was born, until his bladder "kicked in" and he started going on his own. And by we, I mean the nurses. They were training me, and it seemed highly unlikely that I was going to be able to effectively stick a tube in such a sensitive area 4-5 times a day -- I didn't have the stomach for it. He must have wisely sensed what was coming, and willed his bladder to kick in.
So, for the last few years, he has been in diapers (sometimes clothe, and sometimes regular). We give him a capful of laxative in the morning, and then a cone enema at night before bed. We have been working the cone enema on and off for about a year, and it is pretty much the bane of my existence. At first, it was a big, messy, pain in the butt. Literally. But the worst part is, it just hasn't worked. It is supposed to completely clean him out until the next night, so that he has one big bowel movement on the potty after the enema, and then not again until we do the enema the next night. However, no matter what I try, he still has poopy diapers the next day.
I have redoubled my efforts this summer, being more consistent than ever, and leaving him on the potty for longer than before. We have streamlined the process, so that the enema part takes only a few minutes, and we read our books for the next half hour or so. It hasn't made a big difference, until this week. He had a couple of days of really loose bowels, during which I kept doing the enema, and then on maybe the third day, he didn't go at all except in the potty. The same for the fourth. On the fifth day, he had just a little poop in his diaper. We'll see what we get today.
I am hoping and praying that this the the breakthrough we have been waiting for. Once we get his bowels under control, I can put him in cloth training pants. After that, in a year or so, we can start catheterizing for social continence. And by we, I mean him. We want to wait until he can do it himself, so he can just go to the bathroom every few hours, cath, and be done. (Notice how I have neatly removed myself from the equation :)
But the bowels are the key. There is no point in controlling his urine if he is pooping without control. So I am really praying that our persistence has paid off and that we are getting things under control.
To be continued...
