Tuesday, February 7, 2017

A little glitch

Last week, out of the blue, our Neuroimmunologist emailed me to see how Shelbie was doing with the flu and mycoplasma, which caught me off guard because, what doctor calls to check on a patient with the flu?   I told her she was on the mend and then she asked about seizure activity.  Shelbie has had a couple of episodes in the past week of being confused and problems with her speech again and a couple of times she fell while standing in the kitchen.  It has become so common anymore that I don't consider it a 'problem' but just the way it is anymore. When I think of seizures, I think of eye rolling, unconsciousness...not confusion, memory issues, word finding issues, etc.

A short while later, the doctor emailed me back and said she wanted to consulted her epilepsy colleagues because she felt they needed to follow up with these issues sooner than later. Friday, we were contacted that they were ready to have her checked in for a week long EEG of her brain.

It took some serious scrambling to make this work but she is wired up and we have day one under way.  I had to reschedule some doctor appointments we had back home for the kids, two job interviews and one presentation.  That eye of Spencer's...I'm going to miss his third appointment to figure out what to do with his poor eye!!

Anyways...it's been a sort of rough day.  Poor Shelbie has clearly reached her threshold of dealing with these issues.  She's been pretty upset all day and usually, she takes it all in stride.  We've done so well at pushing the reality of this situation so far from us.  She has 30 wires attached to her head and chest and they will stay there until Thursday night.

She is allowed to leave the hospital for the night so we are staying in a hotel.  During the day, we go back and they replace wires and batteries, download information, review the information and I'm not sure what else will happen. We'll see tomorrow.  I had read that they were suppose to wrap her head in a gauze wrap to protect the wires and  such but they had run out of wraps so we had to leave with her looking like a zombie.  We walked from the third floor of the hospital, through the clinics, down the main corridor, past Starbucks with Shelbie sobbing and a pony tail of wires, and her pack of monitoring equipment.  Let's just say, we didn't exactly disappear in the crowds.  

We went to Target to find a scarf or beanie she could wear so she doesn't scare people and I thought it would help her calm down a little and distract her.  But I forgot, we are in crazytown!  When you only have one nerve left, Salt Lake is perfect for fraying that quick, fast and in a hurry!  A man walked in to the store and he was possessed!  The noises coming from his mouth were not human.  He was loud and scary and you could feel the entire store shudder.  His voice boomed through the air and he was walking towards us.  I just froze in unbelief and Shelbie went into full blown panic.  It was a rather scary moment.  We grabbed the nearest scarf and got the heck out of there.

When they started the scan, the entire screen looked like a scribbling mess of a 4 year old.  The tech said, "Oh my!! Calm down honey! Look, just calm down.  You're okay!"  She spent about 10 minutes just getting some sort of normal brain pattern on the screen by doing some breathing exercises and relaxation things with her.  I had no idea how much stress affects your brain waves!  No wonder I can't concentrate on anything, my brain must be a total mess!  Shelbie's started looking better after a bit.  She said I need to keep her calm and relaxed!  Funny.

The best we can hope for at this point is seizure activity.  I always find myself saying the craziest things but seizures can be managed.  Strokes, Central Nervous System problems and brain deterioration due to shortened telomeres are all unmanageable and progressive.  I can't imagine that that becomes our fate.

We are a little on edge this week.  A little nervous.  A little upset.  A little of everything.  As recent as Sunday, she had an episode of word confusion.  It lasted a couple of hours.  I really hope they catch something.  I really hope we get some answers at the end of all this and hope she has many more good years with this poor brain of hers!!


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