Sunday, May 31, 2009

Juggling update

Friday I took Annie down to the neuro-nurse to discuss weaning off of zonisimide, so that we could soon be on 3 seizure meds, instead of 4. And that's the plan--one less pill a day each week, until she's off of it--probably 6 weeks. Of course, right after we got back home from our appointment, she began with the gagging/nausea/vomiting, making me feel like maybe I should have stayed at the hospital. In fact, Bill and I were debating whether to take her back there for the rest of the day. The juggling act we had to do with keeping her hydrated, keeping the stomach contents in with zofran, (how much of this are we allowed to give per day??), trying to help clean her gut out with--well, you don't want to know this much information--it was a very interesting day.

But the good news is, Saturday the sun came up, and with it, a refreshed--if somewhat wrung out--Annie. She seemed to be so much better yesterday--and only had ONE seizure all day. The bad news is, it happened while Bill was strolling her at the mall. Sometimes we forget what her seizures look like to the rest of the world, then get a fun little reminder like yesterday. Bill was happily walking her through the mall, when Annie suddenly slumped forward. Sometimes the seizure begins with an eye-roll, so maybe that's what the lady saw first--the lady who saw Annie's seizure, and yelled out, "Oh my GAWD!", then ran up to Annie as she continued to yell, "Oh my GAWD!" Bill stopped the wheelchair, bent over to pat Annie on the back, and tried to calm the lady down: "It's okay, she had a seizure, she'll be alright, look, she's coming out of it, it's okay," while thinking: would you please lower your voice so the mall police don't come running to look at Annie too? The lady looked up at Bill, looked around at the gathering crowd, and then slowly walked away. Poor Bill. Poor Annie. And poor lady who doesn't get to live in seizure world every day.

But--let's not forget that one seizure is better than six--so thank you for your prayers, and maybe send one up for the lady at the mall.



uncle jeff said...

probably knocked a few years off that woman's life.

i love you miss annie:)

Anonymous said...

I think it is time that you wrote a book Ms Jean! Just think of how all your anecdotes, wisdom, understanding and just plain "been there" would be received by all of those people who have to deal with being a caregiver on a daily basis or who have gone through a traumatic change with someone that resulted in a different, well.....someone. And for all of us who need to be thankful every moment for our children who haven't yet gone through something traumatic. Those real life, been there-done that books are very therapeutic for others going through it. Just a thought! Besides, you're writing is FANTASTIC!!!!!

Love ya!

Tanya W.

Anonymous said...

Amen, amen, and again I say: amen!

Continuing love and answered prayers (about the seizures.....I'll pray for the lady, too.),

Terri W

Gretchen said...

Thank you, Jesus for less seizures, and for the faith in this family.

Teena said...

Huzzah for one seizure!
ouch to the public seizure. That is so not fun...people get really upset, and you end up comforting THEM!
Are the docs sure Annie's not toxic from too much meds?
Weaning is GOOD!

Jean said...

Jeff--I'm sure you're right, and Annie loves you, too. :)
Tanya--I might have a book if Bill keeps providing me with this kind of material.
Teena--I totally believe that Annie has side effects from side effects from side effects. She needs to get OFF at least 2 of these seizure meds, and I think that's the goal of the docs, too. She probably just needs some molasses cookies and milk, and THEN she'll be fine.

Jean said...

Terri--Thanks, too!

Sue Powell said...

Well at least your life is interesting! Hang in there, Jean... I am praying for all of you.

Anonymous said...

Your welcome!

P.S. I know at least one Mary Bridge nurse who quit making molasses cookies at Christmas time.......she honestly could not stomach the thought (it's true!)


Terri W

Susan said...

Oh my goodness...what a scene that must have been! Praying for you all.