Friday, October 21, 2011

What's the Plan Stan?

Yesterday Ava and I spent the afternoon at TCH in the outpatient pavilion, 3rd floor.  We visited with two epileptologists (Keator & Brooks-Kayle) and have finally come up with a game plan on where to start…again.  Ava will be in the epilepsy monitoring unit (EMU) for a minimum of 24-hours and up to 4-days, in the next week or two.  She will also be going under for another M.R.I. in the next month or so.

She is also shedding ALL meds except the benzodiazepines.  She has been on them soooo long; she will probably never be able to give them up.  The downfall of this predicament is that if she gets into status epilepsy, they will put her in a coma.  If she misses a dose, she may go into status.  So we will be coming up with a detailed plan on how to handle life should Ava have a stomach virus or something else that might prevent her from getting her daily dose.  Rescue meds need to be rethought.  Also, there are very few treatments outside of benzo’s, initially Ava don’t seem to be a good candidate for other options that have a very low success rate, anyhow.  After her vEEG we will discuss this further.
Let the screaming ensue, at above its normal rate.
Since January we have been trying to accomplish a means to some ends.  We lost, apparently a BAD neurologist, was sent to anther that specializes in strokes.  She sent us on to the neuro-metabolic clinic where we had a nice visit and plenty of testing in progress but no commitment to helping us address the epilepsy by following through with coordinating care orders for the EMU.  Finally I am relieved to be here, because about 3-weeks ago the initial appointment was squashed the morning of, leaving me frazzled.
I suppose I am still frazzled, maybe I will always be in regards to this subject.  Enjoy your weekend!

1 comment:

Rebecca said...

Hopefully this new direction will bring some answers. Hang in there with all of this. Thinking about you all , especially today and the next few to come!