VESICOSTOMY: Our CDKL5 Child’s Surgery


One more “normal” that is taken away from Harper

My head hung, my heart sank, and I fought back the water that began to fill my eyes.  It’s just one more thing Harper has to deal with; one more surgery that is risky in and of itself. Increased risk when you have a child with compromised and sensitive immune system due to CDKL5 disorder. One more “normal” that is taken away from my little girl.

Harper’s been fighting a chronic UTI (urinary tract infection) since March 2015. She’s tried nine different antibiotics including a shot that should have killed everything.  She’s taken every probiotic and urinary tract support supplement available.  For only ONE week out of 20 has she tested negative for a UTI.

UTI as a CDKL5 complication

They cause her seizures, chronic pain, and an inability to maintain her oxygen levels.  With all that discomfort, Harper keeps going.  She has a birthday party, intensive therapy, Love Day, and competes in a pageant all while suffering with a UTI.  I would expect that kind of strength from an adult, not a 5-year-old little girl.

Thanks to her amazing team of doctors, home healthcare nurses, and all the equipment we have at home we are able to keep Harper out of the hospital. But that doesn’t mean we are able to keep her well.  It’s been a long battle and it makes her life hard.  Who wants to be sick for five months?

In our latest visit to our Urologist Dr. David Ewalt, we were all in agreement that what we are doing is not working and we cannot continue in this direction.   What I wasn’t prepared for was the solution: VESICOSTOMY SURGERY!

I wanted to resist the idea of surgery. What changed me was Dr Ewalt’s comment when he saw the sadness inside my heart that I simply could not hide from my face.  “It will make Harper’s life better.”

I instantly thought of our g-button situation.  I fought the Gastronomy Tube surgery for over a year because of lack of knowledge and because everyone who mentioned it kept saying it will make my life easer.  I’m not concerned about my life but rather Harper’s…and what will make her life easier.

I took a deep breath and said, “I am confident in the team of doctors I have hand picked with the help of her primary care physician, Dr. Richard Rivera. I believe that each of you are working to make Harper’s life as best it can be. So, we will schedule our surgery with you today.”

August 13th is Harper’s surgery date

We are looking forward to Harper finally being rid of this pesky chronic infection so that she can go back to enjoying a life in which she has worked so hard to be free from seizures. Now she will be free from UTI as well.

To find out what Vesicostomy surgery entails, St. Louis Children’s site has good information. They discuss the procedure and resulting opening in the child’s abdominal wall as being temporary. The surgery is reversible, but most likely permanent in Harper’s case.

Please pray for Harper’s quick recovery from her surgery and for the doctors and nurses during the procedure. You can also ask questions and get timely updates on how she is doing by following Harper on her Facebook page.

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