Skip to main content

The unexpected

Today was so completely unexpected.

It started out okay.  Shelbie seemed to be doing better.  She was not in pain and so decided to head to Idaho Falls to get some fabric for a photo shoot she has tomorrow. I had a doctor's appointment and a couple of houses to clean.

At about 12:30, I got a frantic call from her that something was happening to her head.  Her eyes weren't tracking, she was foggy and said she felt like she was going to have a seizure.  I suggested that she grab a candy bar and see if getting some sugar in her system would help.  She has a history of low sugar that can make her feel weak and shaky.  I wasn't sure this was the problem but I didn't know what else to tell her.

About 15 minutes later, she called back and had lost vision in her right eye.  Still having a hard time tracking with her eyes, she had pain and tingling in her right arm and couldn't make sense of words.  She could see them but couldn't figure out what they said.  I was pretty nervous. My mom had a stroke a few months ago so I was a little extra worried.  I left right away and dashed down to Idaho Falls.  It's a 35 minute drive to where she was.  Another 15 minutes after I left, she called back crying and upset but her vision was back and she was getting feeling back in her arm.  Some people nearby had seen her crying and offered to stay with her.  They also shared their leftover Chick Fil A fries with her.  They were very nice people!

My first thought was that she had had a stroke.  Anyways, I got to her and I brought her back to the ER.   The ER was slammed!  I couldn't believe the number of people in the middle of the afternoon.  We got the last room.  When we finally saw the doctor, his thought was a stroke as well or a complex migraine that came on in a strange way.  The interesting thing is, it passed relatively fast and she never really experienced headache pain.

They did an MRI around 5 tonight.  It seemed impossible to me that she could have anything wrong with her brain and I kind of thought they wouldn't find any bleed.  He said unless she had a massive bleed, they may not know.  Even if a blood clot traveled through the hole in her heart and to her head, it was probably long gone.

I had a presentation at 5pm in another small town close by.  It was the first time I have ever chosen my job over my kids.  I had interviewed for this big project twice and was hired over three other designers.  I had already cancelled our presentation twice due to Spencer's issues two weeks ago, so I didn't feel like I could cancel again.  My Wasband was able to come up and sit with her while I ran to my presentation.  It sucked...my presentation was okay but I was so torn and couldn't even concentrate on the project.

I got back just as she was getting back from the MRI.

They didn't find a clot but they found several 'spots' or 'lesions' on her brain.

I can't even believe it!  The radiologist wasn't exactly sure what they were.  I have a feeling that they are AVM's.   When we met with the cardiologist in Utah back in October, he said that by the time the venous malformations show up in the lungs, they are probably already in the liver, which is usually where they start, then spread to the lungs.  The next place they spread to is the brain.

Earlier this year, they accidentally found all the "Non specific spots" on her lungs and said it was nothing.  Upon closer inspection from our pulmonologist, they discovered they were holes from the AVM's.

Ahhh...we left the ER with a CD of the MRI.  I will be on the phone tomorrow with NIH (National Institute of Health) where they are working on some research for us.  They are currently doing studies on AVM's and dyskeratosis congenita.

The ER doc who recently moved here from the U of U said, that if they are AVM's in her brain, they could create an aneurysm which is the big risk with brain AVM's.  We aren't sure if these spots are what created the neurological event today.

I'm trying to understand what is happening to us.  I remember on our last visit to Seattle to meet with the doctor who found the gene, tell me that she expected Sam had a few more good years left.  She said that most of the complications with the disease come in the third decade of life, between the 20's and 30's.  I believe we have arrived at this point with Shelbie and Spencer.

Spencer arrived home during all this chaos and met us up at the hospital.  He seemed a little distraught.  He had a pretty rough day himself.  Tonight, we are all together, the kids in their element with each other.  Shelbie is feeling better.  She is worried but I'm pretty sure it hasn't exactly started to sink in yet.   The distraction she has with her brothers is good.

I'm rambling now...but I really need to work on seeing my kids as anything but normal.  I think this is so hard because I like to believe we are normal.  For all of this to be happening to a completely, normal, healthy family is insanity!  The fact that this is all happening to a family with a fatal genetic disease is entirely normal, even expected.

It's all just hard and unexpected.


Photobucket

Comments

Popular posts from this blog

Some Results

I was surprised to get a brief update from our doctor this morning.

They did not catch any seizure activity last week.  She said that while that may be good news, it didn't rule out deep structure seizures.   I asked if the test gave any insight to the cause of the slowing of activity in her brain and these were her words.

" No, this does not give an answer ... But it is just one test, done one time ..."

We are still waiting on the MRI results.  I'm not losing hope.  I know, I play this game ALL THE TIME...I wish for problems that no one in their right mind would wish for.  I only do that because it's usually the option with a fix.  Of all the things they are considering to be an issue for Shelbie, seizures are the simplest explanation and medication would manage it.

I'm certain we aren't going to find a solution to her problems any time soon.  While I sat in the waiting room during her 2 hour MRI last Thursday, there was a couple in the room as well.  A…

Random Saturday

Whenever I feel like we are careening out of control, I declutter and clean.  By midnight on Friday, I had 1/3 of my living room filled with stuff I didn't want.  Today, I made a couple of trips to the thrift store and the dump.

Ahhh, I feel like I lost 20 pounds.

When Sam came home after his first week at school a while back, he said, "Wow, my room looks the same."

"What did you think your room would look like?"  I asked.

"Clean."

Turkey!  He came home this morning with his laundry and was a bit despaired.  He said, "Mom, you gotta help me with the smell in my apartment!  I can't stand it anymore! Do we have any Ozium?"

He went on to explain that there is no garbage disposal in the kitchen sink but food gets crammed down there anyways.  He said he keeps putting the little metal drains in that are meant to catch bits of food but his roommates take them out.  He's about fed up.  And while he was on his rant about boys and their leve…

A Witness

I was expecting just another run of the mill night at the gym last night.  The kind where the 'meat heads' stay at their end of the gym grunting and groaning to sound strong and I would claim a little corner in the room where the Yogi's hang out and Plank, and there I would Spin on a bike for a few miles, do some rowing, a little TRX and finish up with some free weights.

Last night though, I actually decided to do an easier workout and took an inclined walk on the treadmill.  There were no meat heads in far end of the gym.  No one really at the gym at all.  For the longest time, I kept pace with an old guy on a bike behind me.

But then, a man and his son came in.  I knew them.  I knew them well but they don't know just how well I know them.  They have a son who passed away from Cystic Fibrosis a little while ago, he would have been Spencer's age now.  They have a younger son who also has CF.  I knew his wife and mother in law back when my kids were being diagnosed.…