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.

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.