Last week was a crazy week and so I didn't update as soon as I'd planned. Thought I'd put up a water picture, since we are talking about urology (pee medicine). This is Nickolas discovering that if he dumps the water from his sippy cup out, he has a whole new water toy!!!
He got totally soaked - but it was worth it!
We were at home for 3 days, unpacked, cooked, cleaned and went to appointments, then packed again and and back up to the cottage. The kids don’t seem to mind the busyness. We were back at Bloorview for another physio appointment – we go every week. 1 hour there, 1 hour physio and 1 hour back. I really like our physio, I’ll be really sorry when we get accepted to our local children’s rehab, but I will not miss those 3 hours every week! But I will really miss our physio – she actually makes it worth those 3 hours.
When we were there we also got to talk to Julia, Nickolas’ nurse. She helped to clear up our ditropan questions. She was really good, I felt stupid that I hadn’t asked these questions at the time. But she completely understood that sometimes you just need to think about it, or talk to others and then a whole bunch of questions come pouring in!
Ditropan – we have started it. We are starting very slowly 1 mL once a day for the first week, then twice a day for the second week (where we are now) and then three times a day for the third week. Then we start increasing the dose to 1.5mL if he tolerates that. Nickolas is getting a little flushed sometimes, and we have increased his Miralax/Restoralax (laxative) but so far so good. We are getting more volumes when we cath and while he’s not quite dry between, we are getting there.
It is such a change to want dry diapers instead of wet ones!!! I’m not too sure I like it. But the idea is to relax his bladder, so it doesn’t have to work too hard and damage itself and the kidneys. So a relaxed bladder means more volumes when we cath. A fully relaxed bladder means dry diapers in between.
So the reason we are on ditropan is that even though Nickolas does pee on his own, and he does hold urine, a child with spina bifida would not have a completely flaccid bladder. The bladder and the bowels receive confusing signals from the brain because of the nerve damage. The bladder reacts by freaking out and spasming. The bowels on the other hand, get confusing signals and just give up, don’t do anything and wait and see. Constipation.
The ditropan calms the bladder, but it also calms to bowels. The spasming is important to stop because it will force urine into the kidneys and damage it. As well, the bladder is a muscle and a muscle that is overworked (insert picture of bodybuilder here) gets hard and thick. Hard and thick means damaged. This is all that we are trying to prevent/stop. This will also protect his kidneys. One of the most important things to do is protect the kidneys.
So here we are. Starting ditropan, off antibiotics. The ditropan is working – we are getting larger volumes, so I guess that is a good thing.
Oh we also decided on the circumcision issue. Boy did I open a can of worms with that one! After looking through different sites and reviewing discussion started by another mom who has a son with SB I decided a couple of things. 1. Circumcision has been shown to decrease incidents of UTI’s (bladder infections), 2. Spina bifida does come with a risk of UTI’s, 3. Nickolas has not had any UTI’s [knock on wood], and 4. We have some time to decide. I don’t want to go past 18 months before making a final decision – once he realizes what his penis looks like I don’t really want to change that. So for now we are waiting, with circumcision an option if his bladder starts to act up.
And there we are.
He is not as happy as we are. But a couple doses of tylenol, some frozen vegetables in his net-thing and we seem to be getting through ok. He is irritable and I've checked his shunt more than once over the last couple of days - even though I know it's teething - always nice and soft.
