Last week, the first week after her medicine was increased, she seemed to be tolerating it well, and it seemed to be doing its job. She wasn't saturating her diapers as much, and we were getting higher residuals (the amount of urine obtained during a catheterization). But as of this past week, the second week of her being on the higher dose, she started showing some of the negative side effects of the oxybutynin. Her mouth and lips would get really dry. She was more constipated than usual. After getting her oxybutynin, her skin all over her body would get red, and her cheeks would look wind-burnt. She also seemed like she was having a really difficult time regulating her body temperature. For instance, her feet and legs would be really cold, but her back would be so hot, it felt like your hand should be burnt from touching it.
She wasn't showing too many of these symptoms until Monday night. Monday, early evening, shortly after her mid-day oxybutynin dose, some of these symptoms occurred at once, which had not previously happened. Her skin was red all over her body, she was really irritable and uncomfortable, her cheeks, mouth, and lips were dry. And her internal temperature was slightly high, 100.0 on the dot. She had not previously had a fever correlated to her oxybutynin, but I gave her some Tylenol. Within a half an hour, she was fine. But throughout that night, it was seeming to me like she wasn't having bowel movements like she normally does.
Then Tuesday morning, she got her oxybutynin around 8 am. She only had a smear of poop in her diaper, which is unusual for her. At 9 am, Mira's pediatric nurse, Sheila, arrived for her shift, and when she picked up Mira, Mira cried out like it hurt her to be moved. She did it again each time for the next couple of hours. By noon, she started getting really lethargic, and Sheila and I noticed that she her fontanelle (soft spot) was getting harder. Her shunt site, which is usually extremely defined, was becoming less defined around the hardware, and Mira felt really hot to the touch, even though she wasn't running a fever. By 1 o'clock, when I was leaving to get Dustin from school, Sheila and I suspected shunt malfunction, and I started making the appropriate calls to get Mira to the hospital.
I called my Dad so he could take Dustin, our 5-year-old son, and Aryanna, our 2-year-old daughter.
As I was getting Dustin from school, packing up the kids, and waking up Joe (as he had just worked the night before); Sheila was packing up Mira's bag, and getting her ready to go.
During this time, Mira was becoming less and less responsive, and was over all difficult to keep awake.
I called down to Children's hospital, and asked if she should be life-flighted from Greenville.
They said that if I thought she'd make it, to just head down, but if anything changed during the drive, I could call and have emergency response meet us on the Interstate.
So we threw everything in the car, and off we went to the hospital.
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