Recovery, Day 2 (June 2, 2011)

Day 2, resting in her bed:

Dr. Reid wanted her to get some sunshine in the day room/play room at the end of the hall, Celia wasn't too happy about becoming mobile (even if it was in a wagon!):

Day 2 was much harder, pain-speaking, on Celia than Day 1. I think it is because the first day she was experiencing the effects of both the anesthesia and the spinal that she received for pain control. What most sticks out in my mind about Celia's hospital stay was how difficult it was to get her to take her medicine/force it down her throat! She really hated it. At night, I slept laying next to her in her hospital bed (not exactly comfortable!) and would wake up every few hours to assist the nurses in getting her to take the different meds she was on (pain, stool softener, and an anti-bladder spasm med). She fought us tooth and nail. It was hard to keep her pain under control so the nursing staff contacted our doctor who okay'ed one dose of narcotics for her. They don't like to go that route because narcotics are constipating (the kiss of death for kidney patients!) and you cannot go home on narcotic pain meds. The dose she received did calm her down enough so she could rest comfortably. The poor girl was in so much pain she was thrashing and screaming, in effect making the pain worse. She was finally able to get good sleep with reduced pain.

Day 2 also brought her some visitors and gifts...which she was all about!!

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.

the beginning

It all started for us on December 24, 2010. The husband had to work, so I took our 3 kids (at then aged 5, 2, and 6 months) to my friend's parents' Christmas Eve party. Celia, our only daughter and middle child, was acting very clingy and being exceptionally quiet. I wasn't concerned, she was 26 months old and at a new place for the first time. As the night wore on she started screaming every time I tried to put her down. I remember being somewhat annoyed, trying to carry her around, supervise our 5 year old son, Oliver, and also meet the baby, Edmund's, needs. We left at a decent time (kids' bedtime is 7:30-8:00 at the latest), I got the kids loaded up and we drove home.

By the time we arrived home, Celia was burning up. I got the kids bathed and the 2 boys put down to bed, and then stayed up with Celia trying to comfort her and help her feel better. The bath helped a little bit, and she initially responded to Children's Tylenol, but her fever spiked again and she was extremely lethargic. My husband got home from work around 3:00 a.m. (Christmas Day). I was so tired, and already in my pajamas, that we decided he should take her to the local ER. When he brought her back a few hours later, he had antibiotics for her and she had been given a shot. She had tested positive for Strep throat and for a UTI. It seemed to both of us like a straightforward diagnosis and we hoped our other kids didn't get Strep, too.

We had a follow-up visit with her Pediatrician in early January, and all seemed to be going fine. He wasn't too concerned with the UTI, told us they are much more common in little girls than boys, and had us finish out her antibiotics. The problem was that after Celia initially perked up from the antibiotics, she started acting 'off.' As her mother, I noticed it: low-grade fevers (not even 100.5), lethargy, loss of the sparkle in her eyes. I phoned the physician a few times, only to be told knowingly, "it's a virus." She did have a few more UTI's pop up, but at that time I had no reason to be alarmed.

In early April, Celia spiked a very high fever, again after a day of lethargy, and it was a very scary night. I thought I read the thermometer wrong: 104.9. My husband was out of town, and it was me alone with the kids. Tylenol and Motrin wasn't working and she was moaning and seemingly not "with it." The next morning, when our Pediatrician's office opened (thankfully they are open on Saturday mornings), I was waiting with Celia. I had to carry her, she was so out of it. Our Pediatrician was on vacation so we saw another physician in the practice. After walking in the exam room door and getting a look at her, he told the nurse to call over to the hospital and get her a bed. The hospital and the doctor's office are connected, so they took her straight over. I had called my mom and she came in from out of town to help with the boys, so luckily she was with them in the car.

Celia was in the hospital for 7 days. IV antibiotics weren't working, which was scary. They initially got a handle on her fever and she was released after 4 days. Within 12 hours it was back up to 105 and she was re-admitted. She stayed another 3 days. Our Pediatrician was back from vacation and came to see us the day he released her. He referred her to the Children's Hospital in Peoria for more testing, by this time it was determined that she had suffered a nasty bout with a kidney infection.

these events marked "the beginning" of our journey into pediatric urology.

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.