Wednesday, January 1, 2014

Another urology check up

A little over a week ago both of the kids had another renal ultrasound. This is about the fourth visit that we have had the same tech so it is nice to see a familiar face.

Sara went first. Typical white spots all over from her kidney stones that are still in both kidneys. It looked like there were 2 in a new place but ultrasounds are not good at showing a clear picture of the stones, as opposed to an x-ray. Today we were looking for any major changes and making sure her kidneys still look healthy. The funniest part was when she had to provide a urine sample in a specimen cup. Sometimes she has a hard time and I sing a little song to make her laugh. This time she had no problem going...and going...and going. Let's just say the cup runneth over!

Both the kids got a little present from the tech, which they loved! Perfect travel companions for our road trip to Iowa for Christmas later that day. Meet "Nuts" the squirrel and "Sammy" the bear.

I was fully expecting Dr. Rhee to say this was Adam's last appointment and he was released from his care. When Adam had his surgery a year ago, the doctor told us quarterly ultrasound follow ups for a year to make sure the blockage did not return and then he should be released. After the first quarterly ultrasound post-surgery, he had healed so much that he cancelled the next one and said don't return for 6 months! Well, when will I learn to throw any expectations I have out the window? Adam's ultrasound showed no change from the previous one. There was still dilation in Adam's right kidney, which is similar to an inflammation or irritation. It's possible that it won't completely go away but the doctor isn't ready to stop following up yet.

As for Sara, she also had no change, which is good. No worse. I will take it. Dr. Rhee did discuss plans for next steps this summer. He would like to do another ultrasound in 6 months, another VCUG, and then surgery. The ultrasound and VCUG can be done in the same day. I was not real happy to hear that he wanted to do another VCUG and pushed back pretty hard. He told me 6 months ago it was highly unlikely that Sara's renal reflux would correct itself at this point. If that is the case why do we need to put her thru another uncomfortable procedure? He agreed that it is very unlikely it will correct itself. But on the low chance that it does, he does not want to waste an hour of surgical time going in the direction toward her bladder if he doesn't have to. He would also like to limit her surgery to 3 hours because anything more than that is too hard on a child to recover from anesthesia. So the plan would be ultrasound and VCUG in June, surgery in July--1 hour repairing her renal reflux on the right and 2 hours of work trying to clear the rest of the kidney stones on the right, and removal of her stent in August. It will be the same type of robotic surgery she had in Boston. A busy summer in preparation for kindergarten. It is possible that once inside, the doctor may find that her scarring is too severe to allow access to the kidneys. If that is the case, he will stop the surgery and have to figure out another option.

The absolute best news we learned was that we can change her daily antibiotics to a pill. She sprinkled the granules in some chocolate pudding and she gave it a big thumbs up, telling me "We can do this every day now, Mom!" Why is that so exciting? The liquid form of her meds costs $300 per month. The pill is $30 per month. Thanks, God!

Lots of emotions that I am processing this time of year as I look back on last year. One year ago from this doctor visit, we were in Boston having pre-surgery appointments for Sara. January and February last year were so exhausting on every level with 7 surgical procedures for the kids, as well as surgery for my mom on her broken arm, and surgery for Shannon's dad on his heart.

The biggest lesson I learned in 2013 was to not ask why. Whether or not I had an answer to everything that was happening would not change the outcome, and it certainly wouldn't change my faith.

1 comment:

Heather said...

At least you got good news on the pill!!! I'm sorry you didn't get the news you hoped for, but I do hope that in 6 months you get amazing news!