I suspected something was up with Luella on Monday when she was running to the bathroom frequently. It was later in the day when it was really apparent but I thought we'd wait and see how things were Tuesday morning. She was awake in the middle of the night with a fever. Jim gave her some ibuprofen and she settled in and went back to sleep. When she got up Tuesday morning she was chipper and singing. I took her temp and she had a slight fever. I figured she probably had a UTI (urinary tract infection) so I called and had an appointment lined up for 11:15. Between 9:00 and 9:30 Luella had two seizures. Thankfully both were short and no rescue meds were required but they were both tonic clonic and so hard to watch. Her temp had gone up pretty quickly which triggered those seizures. She was hard asleep after those seizures and we couldn't get her to take anything to get her fever down. When we were moving her to go to ER she did wake enough to take some medicine at home so we were able to just let her sleep at home and let the ibuprofen do its job. At 11:15 we went in to see the on-call doctor. Luella slept through most of the visit. She woke enough to get a urine sample and then was out right away again. They confirmed it - she does have a UTI. We have her on an antibiotic now and are actively battling these fevers, trying to stay on top of them with ibuprofen and acetaminophen. Unfortunately the acetaminophen doesn't appear to be helping much so we are trying to time the ibuprofen so that we stay on top of the fever but not give her medicine too much before the next dose is due.
At bedtime on Tuesday her temp started climbing again so we gave the ibuprofen right away but the fever won and she ended up having two more seizures within a 30 minute time-span. Again, thankfully these are all resolving without rescue meds or we'd be in the hospital by now. I'm asking for prayers to get her through these fevers and hopefully the antibiotic will kick in quickly.
On top of Luella's UTI issue today, I learned about another Dravet princess, Ruby, who is losing her battle. I'm in tears tonight as I think of the agony her family must be in. They are planning to disconnect her life-support today - on Christmas Eve. :-( Her situation all started with her getting influenza A. So scary how that could turn into something so devastating. Please pray for Ruby's family and also for Luella.