Nora's Kidney Update - April 2016

In April, the day after Nora's four month check-up with her pediatrician, we had a follow-up appointment with her urologist.  She needed to have another ultrasound to see if anything had changed with her dilated kidneys.  She once again was a trooper during the ultrasound and the doctor's visit that followed.

Unfortunately we learned that her left kidney was more dilated than at her last ultrasound in January, which means the urologist wanted to do more tests.  She was scheduled to have a Renal Scan, which would tell the doctor how her urine is flowing.  The test involves placing an IV and a catheter.  Since she would already require a catheter, we opted to go ahead and do the Voiding Cystourethrogram (VCUG) they told us about a few months ago to also determine if she is having any reflux.

Luckily they scheduled the appointment pretty quickly so we didn't have a ton of time to fret and worry.  We went to Children's Hospital on Friday, April 15 for the testing. 

The first test was the renal scan, and as we walked into this big room with all its fancy, intimidating equipment, my tears started flowing immediately (no surprise there!).  The radiologist and technician were both VERY nice, very patient and very calm.  They told us what to expect and then took their time getting to know Nora's veins to determine the best spot for her IV.  She started to get upset as they searched for the best vein, and she screamed while they put the IV in her arm, but calmed down quickly afterward.  Next up was the catheter, and while Jason and I stood on either side of her table talking to her, they slipped it right in.  Baby Girl didn't even flinch!!  They said she was quite the tough cookie!

After all her lines were in, I was allowed to hold and nurse her for a little while as they got the machine set up.  For the test, we laid her on a table and her body was strapped down to avoid too much movement.  They injected radioactive tracer in her IV, which the machine then tracked as it went through her system.  They were looking for a few things: 1. Are both kidneys functioning equally? and 2. How long does it take for the material to get from her kidneys to her bladder? (this part requires an empty bladder, hence the catheter).  That test took about 15-20 minutes and sweet little Nora just laid calmly on the table the entire time.  There was a TV above her head so she paid some attention to that. 

After the testing was complete, they determined they had to also inject a diuretic (Lasix) to get the material to flow completely out.  They said this is needed in 95% of the cases, so it wasn't alarming, but it did add another 30 minutes or so to Nora's time strapped to the table.  She started to get a little antsy towards the end, but the radiologist came to the rescue by dipping her pacifier in sugar water, after which Nora promptly fell asleep.
When that procedure was over, her IV was removed, but they left the catheter in place.  We walked down the hall to a different room where she was to have her VCUG.  For this test, they inject another radioactive material through her catheter and watch how the bladder function.  Nora just laid patiently on the table during the procedure, until they filled up her bladder and capped off her catheter.  You could see on the computer screen as the size of her bladder increased, and she got more and more irritated until she was full out crying.  After a few seconds, they released the catheter and she immediately stopped crying as her bladder returned to normal size.  Crazy!  They took pictures of her bladder and ureters throughout the whole process.  That test was pretty quick.

All in all we were at Children's for most of the morning.  Our doctor was in a conference, so we didn't get to meet with him after the appointment.  I did talk to one of his nurses later in the day and then had a longer conversation with him on Monday to discuss the results.  They learned from the renal scan that both kidneys are functioning normally and there is no blockage, which is a huge relief because a blockage could mean surgery.  The VCUG, however, did show that Nora has some reflux on both sides, but worse on the left side (urine that has entered the bladder returns back up the ureters, which it's not supposed to do).  The doctor said in most cases, especially in girls, they grow out of this issue with no intervention.
Zonked out after our long morning!
For now the plan is to keep Nora on the preventative antibiotic until next April, when we will repeat the VCUG again.  I was having a hard time imagining all this testing on my four month old, but now I'm REALLY dreading trying the same with a mobile, squirmy 16 month old!!  Hopefully she's a much a trooper then as she was this time.

We were so proud of our sweet baby girl and how she took all the poking, prodding, and lying still on tables in stride.  We are grateful to have some answers and even more grateful that she doesn't require surgery now (and hopefully not ever).  Here is our happy baby girl a little while after we got home that day; no worse for the wear...

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