This was 8 hours before another seizure. Seizures are scary. Things are so normal prior and they happen out of no where, so it seems.
Another early morning, where we all should of been sleeping. Another morning of blankness, glazed over eyes, unresponsiveness, and enough vomit to aspirate on if I wasn’t there to snatch her up.
To add insult to injury, Lennyn’s hospital is inundated with Covid patients, to the point that her neurologist treated her over the phone instead of having her go in for an EEG and MRI to make sure her brain is ok. Because it’s not safe. Because there are no beds.
We were told to bring her to a different children’s hospital if she seizes again this weekend. A hospital that her neuro team doesn’t have privileges to and a hospital that we’d have to treat with an entirely new team because that’s better than exposing her for hours in a shared ER, in a hospital that with very little room.
Please think of kids like Lennyn and other people with chronic conditions. When you refuse a vaccine (fair, that’s your right) and at the very least a mask, and you end up with severe illness from Covid, you’re using up resources that the high risk community NEED to survive, and for no good reason because severe illness is preventable when you’re taking the proper measures.
This is bigger than you. The medical community is tired. The special needs community is tired.
In the meantime, rescue meds and increased meds seem to have stabilized Lennyn. She’s near the max dose of Keppra so if she continues to have seizures we will need to introduce meds that require routine lab work. Please pray this is it for her and that she’ll finally get the break she so desperately needs after 3 years of seizures, infection, and brain surgeries.