Monday, May 31, 2010

Back from St. John's

The hubster and I (accompanied by Grandma) had to drive to St. John's on the weekend to bring Sarah to her annual urologist appointment.

Some of you may remember past posts on Sarah's condition. Basically, she has reflux in her left kidney. Normally, if everything is functioning correctly, urine will flow from the kidneys through the ureters and into the bladder. However, Sarah has an obstruction in the ureter. This causes the flow of urine to be partially blocked, making it flow back into the kidney (reflux). This pushing back of urine into the kidneys can cause permanent damage if not closely monitored. At the moment, Sarah's left kidney is functioning at about 60% with a reflux level of about 3.

On the bright side:
- This is a treatable condition in most cases and is fairly common.
- Sarah's reflux could be worse - she is a level 3 (with 1 being best, 5 being worse)
- Many children will gradually "grow out of it"

On the negative:
- We have to take meds every day and Sarah hates taking medicine!
- Having a VCUG done every year is NOT fun at all! (especially when Mommy realized she wasn't allowed in the room this time being prego and all - xray...duh! Good thing we had Grandma cause Daddy is just no good at that stuff!)
- We have to drive 8 hours to St. John's every year to see the specialist as there isn't one in our area.
- Sarah's test results reveal her condition is slightly worsening every year.

Here's what the doctor thinks:
We still have some time to work with as Sarah is still only 3 years old. Studies at the moment show that 8-9 years of age is the cut-off for the condition to improve on its own without surgical intervention. So, we'll go back next year in May for our regular tests (VCUG and ultrasound) to check again on the development of the reflux. IF there is no improvement or if the condition has worsened again, then they will probably want to perform a day surgery procedure to dilate the obstructed area of the ureter. We will then have a follow up VCUG a few months later to check if the dilation is helping. Hopefully it will. Our option otherwise, a few years down the road, would be surgery to repair (with a stent?) or replace the ureter. I don't have the full details on how this surgery would work - I'll need to do more research.

So let's cross our fingers for little Sarah for improvement over the next year.

P.S. According to our ultrasound, it appears that baby#2 has all of its little kidney/bladder/ureter parts in tact :)

If any of you have to go to St. John's for medical testing or treatments, the place recommended to us (thanks Wendi!) for our stays has worked out very nicely and gives a discount with a copy of your doctor requisition. Click on Hillview Terrace Suites for more information. Rather than a hotel room, these are furnished apartments (at about the same cost of a hotel) with 1, 2, or 3 bedrooms and a fully stocked kitchen - ideal for an extended stay.


Anonymous said...

Hey Myrna,
I had a similar condition when I was a baby. I had a "leaky valve"... it was pretty much the same thing except I didnt pee at all!!! I had surgery at 7 months and they fixed it no problem.
I've had ultrasounds since then and the only problem now is that I have to pee 3 times as often as other people (so imagine me at 9 months prego with that condition lol).
Just wanted to let u know that Sarah will be fine even if it does come to surgery (I hope it doesnt and that it corrects itself) stay positive!!

Tara said...

Hey Girl...I've been thinkin gof you for your trip. Glad you made it home safely and that you got some answers - it sucks that you have to drive THAT far for medical treatment/attention :( Praying little Sarah outgrows this condition!