Urology follow-up and VCUG results

Urology follow-up and VCUG results

On Tuesday, March 24th, my mom and I took Elizabeth to have her VCUG test done in Radiology and then for a follow-up in Urology to discuss the results.  The Urologist wanted to have this testing done prior to her scheduled G-Tube surgery on the 30th, just in case anything would need to be done surgically on Elizabeth from a urological standpoint. 

We went to Radiology first and checked in. In the waiting room, we had a lively conversation with a lovely older gentleman who made mom and I Blue Raspberry Slushies to drink as we passed our time.  The volunteers, staff and Child Life Specialists at CHP are wonderful.  Elizabeth did well during the test.  The test does not hurt but she was uncomfortable simply for the fact that she had a catheter in and they filled up her bladder to look for reflux in her urinary tract.  She was the most upset because she had to be held down so that she was still during the procedure.  Elizabeth was clearly mad at me for a while.  She wouldn't look at me.  She may not be able to communicate normally, but she can certainly let you know how she feels. We call it the "Princess Stink Eye" around here. 

The follow-up in Urology provided us with the results from the test and a plan.  Elizabeth has very mild bladder reflux and only on her left side.  The bladder reflux is the likely culprit behind her frequent UTIs.  This means that instead of urine going out of her bladder, the reflux pushes the urine back up through her ureters to her kidneys.  The treatment is to give a daily dose of antibiotics, and they will repeat her kidney ultrasound in October.  Most children with bladder reflux age out of it, and so we are obviously hopeful that this will be the case for Elizabeth. If she continues to have UTIs, then they may have to consider surgery as an option for the reflux.  Luckily, the antibiotics seem to be working great. She has been taking the antibiotics for two weeks, and this is the healthiest we have ever seen her. We haven't even seen a runny nose or heard a cough, which for Elizabeth is unheard of!!  So, it is obviously providing more benefits to her than just keeping off the UTIs. 

Friday, March 27th is my last day of teaching for the year at KCHS.  I will be taking unpaid leave to be at home to care for Elizabeth.  Hopefully by the fall when school starts again, we will have nursing care all lined up for Elizabeth, and we will have the results back from the exome sequencing (which hopefully tells us something), and we have an even greater plan of attack after seeing the specialists at Boston and UCSF.  Elizabeth is getting her G-Tube on Monday, March 30th at CHP. Dr Austin will be performing the surgery.  I am anxious, but I am also very hopeful and excited to watch Elizabeth thrive with the nutrition she will get from her G-Tube.  It will be a great treat to watch her grow and thrive.  Thanks, as always, for the prayers. I will be sure to update about the surgery!!!!