June 1, 2011: Surgery Day for Celia

Celia before being prepped for surgery.

Prepped and ready to go...she's wondering what is going on!

Out of surgery and up on Level 6-Pediatrics in her private room. Dora joined her from the Gift Shop, and her nurses were nice enough to dress Dora up like Celia!

We feel so very fortunate and blessed to have our daughter be under the care of Dr. Churphena Reid. The surgery went wonderfully. It was an anxiety-filled morning, simply taking into consideration the fact that we were handing our 2 year-old daughter over for surgery. What assuaged our fears was knowing that she had a world-class surgeon and medical team working on her and with us to provide the best care possible. Dr. Reid met with us in a consultation room immediately after surgery and explained the positive outcome of the surgery to us. She sat down with us and answered all of our questions. It impressed me that she did not rush us and genuinely seemed empathetic to our feelings.

After surgery Celia was taken up to her room, which she would be in for the next few days. I hadn't been in the patient rooms in the new Children's Hospital before, and WOW! They rival any nice hotel out there. The rooms are all private and equipt with flat screen televisions, private telephones with a direct line to room service, interactive features on the tv (such as on-demand television shows and movies, information for parents on relevant medical information, etc). There are pull-out sofa beds for parents to spend the night on, as well.

What most impressed me was the level of security on the Pediatrics floor. No one goes in without a photo-ID badge, which expires after a set amount of time. To visit a patient, you first must be put on a list by the patient (or the patient's parents). Once you are on the floor, if a child gets across a certain point too close to the main doors, alarms wail and the doors automatically lock. It is very high-tech and safe.

Celia was understandably in a lot of pain after surgery. Her incision looked exactly like a c-section incision. Low and in-between her hip bones. Almost a year later there is only a whisper of what it originally looked like.

bi-lateral vesicoureteral reflux- Celia's diagnosis

Celia's long and scary hospital stay was followed up a few weeks later with a VCUG (voiding cystogram) at St. Francis in Peoria, Illinois. [Please check out this link to better understand the procedure: http://www.radiologyinfo.org/en/info.cfm?pg=voidcysto]. After the VCUG was performed (not without tears from both Celia and Mommy), we headed over to Pediatric Urology Group.

It was at this appointment that we met one of the most intelligent and surgically skilled people in the world, Dr. Churphena Reid. Dr. Reid is one of the TOP 10 pediatric urologists IN THE WORLD (not just in my opinion...she is actually ranked in the top 10!). After all she has done for our children, she is basically elevated to Saint status in our house. [Check her out here: http://www.pediatricurologygroup.com/ped_reid.php].

Dr. Reid straightforwardly explained exactly what was wrong with our 2 year old daughter: bi-lateral vesicoureteral reflux. In simple terms, bi-lateral means both sides (both of her ureters/kidneys) and vesicoureteral reflux is a fancy way of saying: urine backs up into her ureters and kidneys from her bladder instead of flowing down and out of her body via her urethra. There are 5 different stages of this disease. Celia had stage 3 on one side and stage 4 on the other. Dr. Reid explained that this disorder used to be the #1 cause of girls dying of kidney failure (back before we were lucky enough to have modern medicine!). Surgery was the only option to correct the reflux, which would in turn stop further kidney damage (enlargement, scarring, preserving kidney function) and UTIs.

We could see how enlarged her kidneys and ureters were from the tests. This was also causing frequent bladder and kidney infections for our sweet little girl. To prevent further UTIs until the surgery, Dr. Reid prescribed a prophylactic dose of antibiotics for Celia to take daily.

Working together with Dr. Reid, we all decided that scheduling surgery in the next few weeks was the best course of action. Dr. Reid sent us home with educational materials to peruse. Celia's surgery was scheduled for early June, 2011 at St. Francis Medical Center Children's Hospital in Peoria, Illinois.

A Whole New World

Welcome to my blog about our family's journey through congenital urology defects. We entered this world last December, and now a year later 2 of our 3 children have been diagnosed with related conditions. When our daughter was first diagnosed, I went to the Web to find information and hopefully hear other families' stories. There is plenty of clinical research and information out there, but I came up short when searching for stories of other children. Now, with a second child entering into similar territory, I have decided to start this for others looking for information (take note: I am not a physician!), and our friends and family who are wanting to check in on the kids' progress and/or better understand what we are going through.