Friday, January 29, 2010

all the gory details

We took Megan to the Pediatric Urology department at Primary Children's hospital this morning. And the verdict is...

Ok, background first. Megan has what is referred to as VC Reflux. In completely unmedical terms, I will explain it for those who would like to know. If you don't want to know, skip this part.

Urine collects in your kidneys and passes down through a small tube into the bladder. When the bladder is full, the inner wall of the bladder expands and presses up against the outer wall. That expansion puts pressure on the tube and essentially creates a valve effect without an actual valve, closing the tube off so nothing can travel back up. That's how it's supposed to work.

In Megan's case, the muscles in her bladder are not strong enough to close off the tubes, thus allowing urine to travel back up and collect within the tube and up into the kidneys.

It is considered a birth defect, but generally isn't diagnosed until infections appear, just like with Megan. Often, children with this condition only have the problem on one side. It is rated from a 1 to a 5--1 means there is only a slight reflux, with things kind of getting back up into the tube, 3 is when things start getting back into the kidney, 5 is when enough gets back up that it actually starts permanently damaging the kidney tissue. Megan has this condition on both sides. The right side is rated at a 3 (or a little more--the doctor said "3+" but that's not a real rating). The left side is rated at a very solid 4, only because there is no kidney damage apparent yet. Yet.

With a 4, there is a 20% chance that the problem will resolve on its own, with complications still possible for the rest of her life.

Treatment option 1: preventitive antibiotics. Megan can take antibiotics every day simply to prevent her developing any infections while giving her muscles time to grow stronger, in hopes that the problem will resolve itself. The tests will be repeated every year or so to check for progress.

Treatment option 2: surgery. The surgery done in this case starts with a small incision at the base of the abdomen. Those two tubes I mentioned, one on each side, would be disconnected from their current position and that hole sutured together. The tubes would be reattached at a higher place along the bladder wall, so they will be higher above the usual "waterline" of the urine, and they will be passed through a longer section of the wall so there is more muscle there to close it off. I have a picture of the picture the doctor drew on the whiteboard in the exam room:

but it doesn't really make sense unless I could point to all the different parts and explain what they are, which doesn't much work on a blog. The major thing you can see in the picture is the difference between the two sides. On the left, you can see what it's supposed to look like. On the right (her left), you can see that the tube is expanded and not straight, and the collection areas in the kidney at the top are no longer uniform in shape.

Our chosen treatment plan:
a combination of

Right at the moment, surgery is not realistically an option. General anesthesia is dangerous in a person so young. By the time a baby reaches 6-9 months, risks with anesthesia are the same as those for an adult. So we need to wait at least that long. In the meantime, we will continue giving her antibiotics every day to prevent her from getting any infections.

From what we know, having heard the same story from the pediatrician and the pediurologist, surgery does seem like a desirable option. 20% is not great odds for letting the problem correct itself, and if we do, there is a good chance that she will have multiple infections and still be at risk for kidney damage down the road. In addition to that, there is a chance that this problem could make it hard for her to get pregnant when the time comes, and when she does, she may not be able to carry a pregnancy to term.


This particular surgery has a 98% success rate and fixes the problem permanently. There is very little risk involved, beyond the normal risk with surgery in general.

After discussions with the doctor about the rating of her condition, and our current insurance situation, the plan now is to wait until June and have Megan tested again. If there is major progress, we will continue the antibiotics. If there is little or no progress, we will go with surgery.

The timing is pretty good...we have already met our deductibles (having a baby is handy for that). In the summer, I will be done with school and will be able to stay with Megan for her two days in the hospital and the 10-14 days of recovery without worrying about missing anything.

And now you know. Probably more than you wanted to.


Brenda said...

those are some pretty gory details. I liked all the descriptions and the picture. Made a lot of sense to me. All of this is not fun. I'm glad that you know what is going on though. That picture of Megan is so cute. I wish I could be closer to you guys.

Liz, Karl and Madison said...

That is SO not cool. Poor little girl. :( I'm glad there are ways to make her feel better though. Good luck with it all. I hope the antibiotics work for her.

Britta said...

Make sure she gets a blessing- those can do wonders.

I loved the picture you posted of her! It was so cheerful!

Delia said...

Best wishes with everything. It sounds like she is in good hands medically and with some great parents too.

Les said...

Oh no, I hope everything goes well with the treatments you're going to be doing with her!

pawlyandsandy said...

Wow I'm so sorry that Megan has such bad reflux! I used to do clinicals at Primary children's and we did a LOT of these exams. Unfortunately I've seen this kind of reflux quite a bit, it's so sad. But so comforting that the surgery is so successful! I hope things go well and she'll be fine. Has Chris given her a blessing?
I didn't know there was a correlation with pregnancy issues and VC reflux! That so sux! But if they correct this problem surgically, will that decrease the chance of pregnancy issues in the future? I hope so. So sorry again that you got such bad news. :(

Tannie Datwyler said...

That's not more than I wanted to know! Now I feel informed. :) I always wonder how she's doing with that.

Jamie Younker said...

So not fun! I'm glad there are ways to fix the problem, and that the timing works out so well. Love your blog :)

JeriLynn said...

Mira was tested for this same condition after having 3 UTIs in four months, but luckily, everything was fine. I'm so grateful you have good medical care available for you so you can get this taken care of!