Med levels

Today was not a good day for Hannah.

It started last night.  She woke up around 2:30 am, and even though she was exhausted, she stayed awake until 5 am until Daddy and I switched swifts.  The difference this time was that Hannah’s movement disorder was really significant.  It almost seemed like her seizures were more significant as well.

She spent the day sleeping and cuddling with her nurse.   Very little play time today.   Her nurse also noticed the increased movements and possible seizure activity when she was sleeping.

Hannah wanted to sleep, but her body would not let her.

Then this evening, she started to perk up a bit.  Played with Daddy a little bit too.

Right now, she is asleep in bed with me.  Her body is still, and her twitching (possible seizures) are nonexistent.  I hope it lasts all night long because that would be significant.

I got a call from her specialist’s nurse.  Hannah’s clonazepam level came back at 11.   Low end of normal is 30, so her clonazepam is definitely not therapeutic.  This is her main med for her movement disorder.   We should get her Keppra level in a couple of days.  Last month it was low, so her neuro bumped up her Keppra.

Obviously, we need to bump up Hannah’s clonazepam.  The negative is that clonazepam is definitely a drowsy drug.  We also know that Hannah is on a “baby dose,” and she is at the same dose she started on back in the PICU last May.   It has never been changed from back in Texas.

I hope tonight goes better.  She needs a GOOD rest.  Not a restless one.