Kidney Update

(Brotherly love during tummy time)

 

This is a very "medicalized" post. Feel free to ask any questions in the comments and I'll try to answer or just skip it!

 

Quick Recap:
L kidney is the "bad" and/or "small" kidney with 13% function
R kidney is the "good" kidney with the rest of the function (In case you are wondering, kidney function should be 50/50)

On October 12th we had a VCUG done which showed that the L kidney has grade 5 reflux. Reflux can only be graded to grade 5, so this is the worst it can be. This is consistent with the hydronephrosis we saw on the last ultrasound. Essentially when we saw the test being done, we could immediately see the backflow of urine from the bladder, up the ureter, immediately to the kidney. It was very obvious that the backflow valve wasn't working at all. The ureter is also "torturous" which just means that it is twisted, very dilated (big), and ugly looking. So overall, his whole left kidney system is just not great. The test also showed that his right side has grade 2-3 (subjective apparently) reflux and there is an outpouching (called a diverticulum) right near the junction of the bladder and the ureter. This outpouching apparently makes things "worse" overall. I really wish I could draw pictures on email as this is a LOT easier to describe with a picture!!!

Our nephrologist called us (on a Saturday!!!) to update us on the test and to let us know that she was going to send a referral to urology as if he needs surgery, it would be the urologists who do this. She also upped his dose of his daily antibiotic as he is growing and needed a bigger dose.

We got into urology pretty quickly and had an apt on Thursday with a wonderful urologist. (Seriously, he had amazing bedside manners, was soooo nice to Spencer and Peter, and explained everything so well. We were both quite impressed.) He explained everything again (most of which we already knew), drew lots of pictures, and gave us a plan for the next 18 months or so. Essentially, Peter will definitely need surgery in the future. He will more than likely need surgery on both sides. Many children will outgrow reflux if is is stage three or under (like Peter's right side), but since he has the outpouching on that side, it is very unlikely that his body will adapt appropriately to that and outgrow it. There will probably be two surgical options for him when this occurs, but we aren't even close to thinking about that now. We don't know what will happen yet to his left side. He could just have a relatively minor surgery to fix the angle at which the ureter goes into the bladder to correct the reflux, or he could need the whole entire kidney and ureter taken out. There are a lot of factors which will go into this decision and time will tell what he will actually need. We also don't know yet when he would actually need surgery. Currently, as long as the daily antibiotic works well and he doesn't get bladder infections or kidney infections, then we will push off surgery as long as possible- hopefully even until his is 5 or 6.

The urologist wants to repeat the VCUG in another 18 months but also acknowledges that our nephrologist may need to do the test in 1 year instead of 18 months. So, for now, we will be doing the daily antibiotic for a long, long time (like 3-5 years) and having urine cultures done for any unexplained fevers/illnesses. We will also have growth ultrasounds to make sure that the right kidney is growing 3-4 times per year. We are scheduled for our next one on December 31st and an apt with the nephrologist on Jan 10th. We'll see the nephrologist 3-4 times per year and the urologist 2x per year.

We are happy to have more clarity on the surgery issues and we are certainly happy that people have two kidneys and can live with only one!! Our current prayer is that we can make it through 2013 with no ER visits for unexplained fevers and that we will not have to be hospitalized for IV antibiotics. These would be the worst things that could happen in the next year, so that is what we will be praying won't occur.

 

Overall, we realize we are very lucky. Working in pediatrics for the past 11 years makes me grateful every single day for a very healthy Spencer and, even though Peter has some problems, he is much healthier than many children out there. If you have a moment on occasion this year though, we would truly appreciate any prayers for a infection free winter!