On Monday morning I posted on facebook that Luella made it the whole month of July with only the ONE seizure on the way home from the Black Hills. About an hour after that post (on Monday), Luella had another seizure. It stopped on its own and she slept for about 30 minutes. When she woke up she started seizing again (around 2pm on Monday). It did not stop with Diastat so we rushed to the ER again. It took awhile in Luverne to get her seizure under control. Then we took the helicopter (4th time) to Sanford Children's in Sioux Falls. Luella was doing well there, mostly sleeping due to all the drugs. Around 8pm as I was holding her she stopped breathing. A team of doctors and nurses were there quickly and got her stimulated enough that she started breathing again. They kept the oxygen on her and noticed her breathing increasing and heart rate going up. Her eyes were closed and she was not responding. She was seizing again. They gave her more meds and got it to stop. It was pretty scary. I think there were about 8 people in her room and several more standing out in the hall. We probably would have been able to come home on Tuesday but because of the seizure Monday night they wanted us to stay longer so we were there 2 nights and came home this morning (Wednesday) right before lunch.
Luella's seizure was due to a high fever this time. Ryker came down with a fever on Friday a even vomited a few times Saturday and Sunday. Luella woke up with a fever on Monday morning. I had been giving her Tylenol and Motrin but it wasn't enough to keep the fever down. When Luella stopped breathing in the hospital she had a fever of 103. She hadn't had a fever before that in the hospital so they weren't very aggressive with the Tylenol and Motrin. I was mad at myself for not being more persistent about getting her some medicine. The doctor there said they "dropped the ball" too. :(
I was completely exhausted and took a nap after lunch today. Monday night I only got a couple hours of sleep, last night was better. Because of Luella's breathing scare, both our Mayo doctor and the doctor at Sanford thought it would be good for us to have a home pulse oximeter to have on Luella when she sleeps - it tells us her oxygen level and heart rate. I put it on her at bedtime tonight and she only mildly complained. I think she probably thought, "Well, this is better than all of the stuff I was hooked up to in the hospital!" The Sanford Home Medical people were great in getting it all set up for us today!! Hopefully that will give me a little more peace of mind at night time.
We are fighting hard for Luella and trying to get her the best possible care. Jim has been able to do some more reading about Dravet and we are figuring out our next steps. We'll be heading to Mayo on Monday for Luella's 24 hour study and hope to find out more from that. We want to thank you all again for your continued prayers!