Closer Look: Lauren
My daughter, Lauren is a happy, funny, hardworking 6-year-old. Her family includes, me (her mom), dad, older brother,(who absolutely adores her) and three kitty sisters. Lauren is nonverbal and is doing well with using about 25 signs in sign language and her communication app on her iPad. She enjoys school and has grown so much both cognitively and socially since starting at age 3. Her strength and ability to adapt to her world has been a life changing journey to watch.
Lauren had her first UTI at 4 months old. She was uncomfortable, crying and running a fever.
After checking all the usual suspects, they catheterized her in the office to get a urine sample. Over the next few months she kept getting them which led us to see a Urologist and the start of, what felt like, a lot of testing. She had multiple renal and bladder ultrasounds, voiding cystourethrogram (VCUG) procedure, urodynamics study and rounds of labs. It was found Lauren had a particularly small right kidney, kidney reflux, neurogenic bladder and stage 3 kidney disease. Because of all Lauren’s urology issues, she had a tethered spinal cord and had surgery on it at 4 months old.
We tried to treat Lauren’s chronic UTIs with a daily antibiotic as a prophylactic as well as another medicine to relax her bladder. Unfortunately, she continued to get them and after repeating the tests above we were offered two courses of action. One, we could catheterize her ourselves 4x/day to completely empty her bladder since her body wasn’t doing that on its own or we could have a surgery called a vesicostomy (a surgical opening in the bladder to the outside of the body (lower belly) that allows urine to drain, preventing urinary tract infection or damage to the kidneys). While a vesicostomy can be closed much like a G-Tube site in Lauren’s case she may need it permanently to help prevent any further damage to those organs affected. We went with number two.
If I could offer advice to another family who may be in the same situation, I would recommend to do all the testing doctors suggest and if you are still unsure, get a second opinion.
At first, we were told we only had two options … surgery or catheterizing her. However, we were able to find a good Pediatrician that wanted to help Lauren and laid out the best care plan for her, which made things easier. It was also helpful to have a Urologist from a reputable children’s hospital caring for Lauren and the ability to get a second opinion before deciding to go ahead with surgery.
