New theory

Ok so since last Thursday we have been giving Ellie 1/2 of a seizure med in the morning and 1/2 at night.  The neurologist called us back and said that would be fine to either go down to 1/4 of a pill morning and night or give either 1/2 or 1/4 only at night.  Since this was making her so sleepy, we thought we could probably get away without a sleeping pill.  So that was our plan for yesterday...give 1/2 seizure pill at night and no sleeping pill.  Then no seizure med in the morning.

She dropped her temp last night around 3 or 4 to 91.6 F.  This is getting old.

She only woke up a handful of times yesterday all day long and it was truly not for more than 30 seconds at a time.  Then around 5 or 6 PM last night she woke up.  She was her normal awake self.  We gave her 1/2 of a seizure med around 7-7:30.  Nothing.  No sleepiness at all.  Finally at midnight when she was still wide awake I gave her a sleeping pill.  She was asleep by 12:30 and I put her mask on.

She desatted this morning both at 5 AM and 7 AM.  Groan.

This morning she is a zombie again.  So Jason's new theory is that it is the interaction between the sleeping pill and the seizure med.  I agree.  So now the plan is to give her a sleeping pill at night and seizure med in the morning.  So because she is going to need the seizure med in the morning tomorrow and not tonight we needed to give her the seizure med this morning (because this med is highly addictive and you can go into withdrawals so we need to be careful about weaning).

So basically we still have a zombie on our hands and we haven't started weaning yet.  But tonight she will not get any seizure med.

But then she still had 2 desats this morning...so really are we even doing any good?

Not fun.  I feel like a kid driving with his family to Disneyland saying "Are we there yet?  Are we there yet?" And the parents (God) is saying "Just a little longer, we're almost there."

In good news...a sister in my ward brought us dinner last night.  It was so thoughtful.  It is so much harder once we are home than when she is in the hospital.  It is hard for me when we bring meals to other people who are in the hospital, but they don't for Ellie.  Yes, we're used to it.  Yes, we can do it without help.  But it is really, really, really helpful and nice.  I'm not begging for meals.  Just expressing my appreciation to this kind sister who was either really thoughtful, or inspired or both.  And it was yummy too!  Thank you Sister A.