And He said unto me, "My grace is sufficient for thee: for my strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me."
2 Corinthians 12:9

Friday, February 10, 2012

Day 4

Howdy from the EMU!!

First point of the day: nine years ago today, the best looking and most amazing ever, asked me to be his wife for life!!!  I don't know if he knew what he was getting in to, but I'm blessed beyond measure that he is my hubby!!!!  Thank you, Lord, for B!!

Next, we had truthfully hoped to be out of the EMU at this point.  At the rate I was having seizures (since December), I should have had plenty by this point.  I had EIGHT on Monday alone!!  However, I have only had three since I was admitted yesterday morning!  Typically, we would be rejoicing in so few seizures.  Yet, here we are trying to trigger them.

We were told that the doc would review all of my records yesterday and this morning.  Then, we would see him for rounds around 10am.  Well, he arrived in the room this morning a little after 11am.  We were also prepped that he was one of the best docs on the floor and was definitely the one to see.  They told us how funny he was and that he likes to crack all kinds of jokes.  Well, we barely saw a smile come across his face.

The doc saw B's Corps sweatshirt and asked about Texas A&M.  He's Korean and so we talked about our potential adoption someday.  This was all completed in about two minutes.

Then, he got down to business.  He basically said he still needed to look at my chart (thought he was supposed to do that yesterday), but that he didn't have much to say right now.  What?  We intended to only be here for two days in the EMU and not have to stay another night...this would allow us to be home this weekend to be with our girl.

He wants to see some more seizures because they are all appearing to be on the left side of my brain.  Whereas, the brain surgery (more accurate/detailed view) showed they were on both sides.  If they are all on one side, they want to consider removing that part of my brain.  However, after the testing yesterday, they said it could be too much of a risk with loss of brain/verbal function.  Yes, I know there are many that would love it if I stopped talking, but I would love to still be able to talk to my hubby and precious baby girl.  You know?

He basically left telling me to be patient.  With this being our third trip to Mayo and seizures are continuing to increase (except for the days they actually need me to have them), patience is not a virtue that I display well.  We came to Mayo with the idea that we were going to throw everything at this and try any new ideas they had, yet they are bringing up ideas on treatments we've already done, that didn't work, or treatments that have been ruled out as not worth trying...So, we're a tad frustrated.  We keep reminding ourselves that we leave each visit to Mayo frustrated and then they call us a few weeks later with ideas.

So, they are trying to gather as much as they can diagnostically and then my case will "go to conference" in a few weeks to determine the treatment plan.  They were trying today to push for brain surgery, but I didn't think it was an option since the seizures have been bilateral.  However, we spoke with our neuro in Dallas today and she explained that it could be a choice since the ones I'm having now are only on the Left side and they believe the meds are controlling the ones on the right...

That's all we know today!  Thank you for checking in and praying!!


  1. It seems like a lot of news and yet not much!! I will send out an email to the office today to pray for seizures!

  2. With my son Caleb seizures are always better while in the hospital. You are flat on your back and not up and down like a usual my thinking this helps your POTS and nervous system..... just an idea? This is all a mystery...
    When we started to focus on POTS/dysautonomia and work with the iridologist things changed. Seizures are now gone. We seen with our case...seizures were being caused by the nervous system not being no longer regular. With the blood pressure pills ---milodrine...florinef...and ddvap plus his other supplements things changed. With our case...the neuro's didn't connect the 2 and they were wrong. We are proving it because seizures are not there. We are still working through issues with his doctor and think now we might connect it to the histamine/mast cell issue. Lot of the things my son has reacted to is a high histamine foods. Seizures and POTS are a symptom not the diagnosis. we are trying to find the cause. Praying for you.