Wednesday, February 27, 2013

Cait Update

So here's a bit of an update on Cait. As you're aware, she has kidney reflux or vesicoureteral reflux. It's been a struggle to say the least. It's potentially quite serious, and definitely an inconvenience at the least. We've spent most of the last 7 months of her life in the hospital for surgeries, Specialist visits, urine samples etc etc. It's time consuming. Trying to get a urine sample from a baby is hard and next to impossible...and sometimes takes days before we're successful!

Now, we've been the recipient of a LOT of love, prayers, opinions and advice. And I'm so grateful for EVERYONE's concern! I fully believe there are people other than myself that have answers to some of my questions...and I appreciate they're consideration. It really is great to have so many people who care. But I do feel like I need to explain a little bit of what we're actually up against here as it's definitely more complicated than getting a bladder infection here or there. This is a birth defect. Her Ureter is physically deformed. The connection between her bladder and her ureter us also physical deformed. It's not a deformation you can see...but it's still there. The main problem she deals with is her Ureter. She has what's called a 'megaureter'. So each time she urinates, instead of leaving her bladder and exiting her body it takes a side trip to the kidneys. Which is not good.

The normal flow of urine is: Kidney to ureter to bladder to urethra to diaper!

Her flow is: kidney to ureter to bladder to ureter to kidney to ureter to bladder and then some leaves and heads through her urethra and eventually arrives in the diaper.

She had surgery in October to hopefully stop this back flow. Her Urologist used a scope to insert this gel that basically acts as a one way valve. It lets urine into the bladder at the point, but it doesn't let it back out...which forces it to leave through her urethra! In Cait's case, since her ureter is so huge, the surgery wasn't quite so successful.  In her 10 months of life she's had 7 infections...and most of them were kidney infections. In the 4 months since her surgery she's had three infections....and those all occurred in a two month time.

I have been lucky to never have had a bladder infection...that is until earlier this month. It was AWFUL!! I now understand just the tiniest what she's going through. The difference though is that she actually gets them in her kidneys. And do you know what happens to kidneys when they're infected? They get permanently damaged! And she's had some significant damage to her one kidney. Which is why this is so serious!! I have down played the severity of her condition in the past because I was hopeful we'd have a quick simple fix. But since that's not the case, I feel like I need to be honest here. Kidneys are vital. She's lucky to have two and very lucky that only one seems to be getting the worst of it. BUT if we don't stop this from continuing she can lose a kidney. I know it will never get there because we're soooo on top of things. BUT it's still a possibility. A very real possibility.

ANYWAY, our most recent update is that she just had surgery again last Friday. And as a sign of how important that surgery was, we got in within a week and a half after deciding on surgery with her urologist. That's pretty quick by Canadian standards!! Things went well. Her ureter is still large and she definitely still has reflux. The doctor tried the gel insert again and we're hopeful this will do the trick this time. If not, we have one more go at the procedure and then we move onto plan B (or is it C...or D at this point?). But right now we just wait and see.

Now I know many people have wondered why we're just no preventing these! There's really nothing you can do's internal and has nothing to do with hygiene. However, we do make sure to keep her as healthy as possible, she takes daily probiotics, she takes vemma daily to boost her immune system, we're waiting on an order of d-manose (which is a natural prevention) and she takes antibiotics when needed. We've done a LOT of research on the topic and feel this is the best plan of action. We feel like our doctors have given us so many options and we're really so grateful for modern medicine - it saves lives. But we also feel like a little natural remedy mixed in their can only help. And so we're using both under the supervision of our very capable doctors.

Anyway, we're hopeful that things will work this time. We're hopeful that her kidneys haven't sustained too much damage in her short life. And we're hopeful that this will all be a distant memory one day. We're also fully aware that as far as medical conditions or birth defects she is lucky. She struggles far less than some of the kids in the urology clinic. And we're grateful for that every day. But this is OUR reality, and we have to do what we can with it.

And time to get off my soapbox:)

Here's an old picture that Laura Taylor (of Laura Taylor Photography) took of her back when she was new. It's just a reminder to me of the quiet days. The pain free days. But mostly of the blessing she is in our lives!


Lahni said...

Poor little baby. Here's hoping the most recent surgery is the last!

Anonymous said...

she is a blessing and she is in our prayers, always. Love, G-Ma and G-Pa