Luella and I were on the road early this morning for Sioux Falls for appointments at The Castle. She has vesicoureteral reflux, or bladder reflux, which causes her urine to back flow up to her kidneys. We discovered this early on after her first couple seizures when she was having frequent UTIs. Since then she has been taking a prophylactic antibiotic daily to help prevent a UTI. Today she was scheduled for a nuclear scan to see if the urine was still back flowing.
When we got to The Castle and got checked into her outpatient room she didn't want to get out of the stroller and said "no poke" as she held her little arms close to her. She didn't need a needle poke but she did have to get a catheter and she wasn't too happy about it. Once we got to Nuclear Medicine she was really scared and just clung to me. They had to hold her down for the test and she screamed the whole time. I was right there with her too but she wouldn't settle down. I think she was very uncomfortable with the catheter and them filling her up with fluid. Poor little thing! I was so glad when that was done!
Afterwards we waited around another hour for the pediatric urologist to see the results. He said Luella's reflux has improved. It looked to be completely resolved on the right side and the left appeared to be grade 2 reflux - she had been a pretty serious grade 4 before. So that was all good news. She will still continue to take her antibiotic and will go back in September for an ultrasound of her kidneys to make sure they are still healthy and doing okay also.
When we got home today Luella was feeling okay and playing. We took her outside to play while Jim and I talked about the day. She wanted to go down the slide with me so we went down the slide and then she wanted to be in the sandbox. I took off her shoes and set her on the seat with her feet in the sand by Ryker. Within 20 seconds she just fell over face first into the sand - having a seizure. We took her inside and after 2 doses of midazolam she came out of it.
Hard to say what triggered this one. The sand felt cold to me, Jim didn't think it did. It might have been the cool sand or the texture or maybe just a coincidence and something completely different. She had been in the sandbox just last week without any problems so yet another mystery...
Please pray that Luella doesn't start having seizures due to such simple triggers. I want her to be as "normal" of a kid as she can and having seizures at the pool and now in the sandbox are starting to hinder that "normalness" for her. It kind of scares me to have her out and about wondering "what next?"
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