A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Tuesday, October 20, 2015


We have been trying to get some answers regarding Nick's bladder and leaking. We are getting some additional tests about Nick's bladder after clinic in July. So today we headed out to Sick Kids.

We are collecting information about the bladder so that we can make some decisions for next steps.
We had 2 tests. VCUG where they took some x-rays of the bladder when it was full of contrast and as it emptied. It takes about 15-20 minutes. It gave us an understanding of Nick's bladder capacity.

Then it was Urodynamics. This test is a little more involved, it measures filling the bladder with fluid and measuring what the bladder does. It goes very slow, becuase it is looking as bladder movement and spasms it is important to stay still for most of the time, but then also they asked Nick to cough to see if there would be any leaking.

Nick never wanted to cough when it was time. This was something we should have practiced ahead of time, but I never thought about it. They looked to see what the bladder would do when it was completely full. Nick doesn't usually feel when he bladder is completely full, but after his bladder infection a couple of weeks ago I think he recognizes what he feels.

When the bladder was  full Nick got very uncomfortable and started crying. The good news is that even though it was full, it didn't leak. Now that was with Nick lying down and coughing, not as he is running around and being a kid.

After the tests we got to wait to see the doctors.
Nick and I found some things to distract ourselves with. Like an Avengers Uno game.

And some homework

In the end we didn't really leave with a plan. I had wanted to talk about how to get the bladder leaking to stop. But the tests showed a bladder capacity that was normal and no real leaking when it reached the capacity. So it didn't really help us get some answers.

What we left, it was with a plan to cath every 3 hours instead of every 4 and to measure output for a couple of days and have this information with us at our next visit in January. I'm not really happy with this, but at the same time it isn't any type of surgery. So I guess I am happy.

We talked about what our options are as well. There is botox, injected into the bladder to prevent spasms, but from the tests that doesn't seem to be the answer, because the bladder didn't spasm. The other is a bulking agent, which it put into the mouth of the bladder and bulks that part up so that there isn't leaking.
When we talked in July they mentioned that it is considered to be a surgical procedure (operating room, general anesthetic). Not because it is an operation but because it is an invasive procedure on a 6 year old boy. Which is acceptable.

So our plan right now is to cath every 3 hours and as we get closer to January start measuring and have some actual data to bring to our appointment. And then go from there.

Usually when we go downtown to Sick Kids we go to one of the fun attractions. But this was a really busy week (big stuff doing on tomorrow), so instead we just visited the Disney store.

Captain America was very happy with that plan!

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