Luella had another seizure early on Tuesday morning. I woke up at 6:10 and I thought I heard her yawn. I figured she was awake and would soon hear her say "wake up", but she was quiet so I didn’t go get her. At 6:27AM Luella's pulse-ox monitor started alarming. I went in to see her oxygen levels in the 80% range while her heart rate was normal. I looked in her crib and she was on her tummy and having a seizure. Her oxygen quickly dropped into the 70s. Jim came right in with her meds and as I was about to give her midazolam (her rescue med), she stopped seizing. Even after the seizure she had a hard time keeping her O2 up so we gave her O2 until she could keep it up herself. I'm so thankful we have all the tools we need at home to help her if she needs it. I feel like we run to the ER a lot anyway, but at least these things help us avoid that some of the time.
She did have a fever of 99.7. Unfortunately all the kids have had a touch of some virus and had cold symptoms and fevers. I was hoping to keep it away from Luella, but Sunday night it hit her.
I'm really upset with myself that I didn't check on her sooner when I heard her make a noise at 6:10. We don’t know if the alarm sounded immediately when the seizure started or if she seized awhile before her O2 dropped. I felt in the crib and there was a large wet spot where her head was - she drools / foams at the mouth during a seizure so that made me think maybe she seized longer than the alarm sounding. Hard to know for sure. Since she does have a cold she may have been breathing through her mouth and drooling in her sleep. Jim tries to keep me thinking positive! I'm just thankful that everything turned out okay!
We are still in a balancing act of figuring out the right amounts of medication and really what medication is best. We've been trying to eliminate her sleeping twitches and jerks and, while it is improving some, they are not gone and we are starting to see some of the negative side effects returning - a little more tired and cranky. We did one more increase of the stiripentol last night so we'll have to wait a week or so to see how this increase affects her. Ideally we'd like to find a medication that would give us good seizure control even when she is sick.
I know so many are praying for Luella and our family, but I want to thank my Coffee Break friends for the special prayer for Luella yesterday and for your continued support for me. I think that I'm handling all of this fine and then at times it hits me and I just break down. It's a bit of an emotional roller coaster! We talked about the power of prayer yesterday and I'm so hopeful that someday Luella will be cured of this awful disease! Thank you all for your continued prayers!!