Autonomic Testing

I'm pretty happy that I can see the end of this week close...not that next week is going to be any better but changing the irritations is as good as a rest...or so they say, or maybe that's what I say.

Yeah, that's what I say.  Sometimes, you just need a change in the view of all the current hard things in lieu of new hard things.  Sadly, that's what has become of my life.

That was a horrible way to start this post when in reality, Shelbie's testing ended up being wayyyy better than I had geared up for and the great thing is, no one died yesterday!  So, really, that makes for a really great day.

Instead of leaving Thursday night as I originally planned, we left at 4 am on Friday which means I was up at 3:00 am but technically was awake at 1:45 am so that made for a long drive and a longer day of stressful things.  I was happy to make the sacrifice to save on more hotel and food costs.

It poured rain all the way there.  I was so grateful for my car.  It handled the drowned highway so much better than my old car.  The AWD made all the difference.  We did so much hydroplaning, it was scary at times.  It is so dark in those couple of hours before dawn and with the pounding rain and dark asphalt, I couldn't see the huge puddles we forged our way through.

Even as we neared Salt Lake, the sun was buried under the thick fog and clouds that had fallen in the creases of the mountains.

They got us right in for testing.  Shelbie had to be indoors for 30 minutes prior to the test.  Her testing included three parts.   Below is a picture of the dreaded tilt table I have grown to hate.

 The first test, they roughed up her wrist and foot with sandpaper and then went over the raw parts with saline and then injected more saline and added an electrical current.  It was pretty painful and uncomfortable for her.  She had to lay like this for about 20 minutes if I remember right.  She had to be completely still and quiet.  They got everything started and then dimmed the lights and put on this Tibetan chanting/gong music that was irritating!!

 In between the saline sweat test and the tilt table test, there were some other breathing tests while she laid strapped down to the table.

When they announced it was time for the tilt table, Shelbie panicked.  I started to panic and really wanted to run and hide in the waiting room.  This was the part I just couldn't survive watching in light of Spencer's untimely death a year ago.

Tears streamed down her face and the technician said, "Are you okay? What's wrong?"
"My brother's heart stopped when he did the tilt table test.  If  my heart stops too, do you promise you'll bring me back?"  That was such an incredibly sad moment to see her face all full of fear.  Real fear.  It was a horrible moment for a mom to witness.

The poor guy looked shocked and scared and worried and sad all at the same time.  Gently he said, "I'm not going to let you die.  That was a fluke thing.  That doesn't happen on tilt table tests besides, it's the weekend and having to chart someone's death takes too much time and I'm not into that today."  and then he winked at her.  As it turned out, our doctor had previously reviewed what happened to Spencer and so she altered the test some and Shelbie only had to do it for 10 minutes and they didn't administer all the other medications.  She did have some difficulties with the test even at just 10 minutes but it was way better than Spencer's test.

 Before the testing started, the tech said, "So, your insurance company refused to pay for these tests today.  Were you aware of that?"
"What?!! No!! Then, we can't do this!  I have no means to pay for this. I'm sorry."
"Wait, your doctor feels so strongly that these tests are critical for her to get the full neurological picture of what is happening in her brain, she arranged for the hospital to completely waive the bill.  The hospital will write it all off."

Are you kidding me?  That never happens!  A hospital just absorbing the cost... because? It was truly an act of God.  A tender mercy.  A miracle!!

When we were through a few hours later, we made a quick trip to Provo to take Spencer out for lunch.  He has been so sick the past two weeks.  Sooooo sick.  He looks so terrible, I changed this picture of us to black and white because he is in rough shape.  His cheeks are sunken and he can't keep any food in his system.  I have spent all morning trying to get a hold of our GI doctor in hopes they will put him in the hospital for the day for some TPN- venous feedings.  It's a long shot that I will even hear back til Monday.  I've been madly researching what could possibly be going on and I have made a hundred calls to him with a plan to calm things down...maybe.

I feel like it's either a telomere thing, mito thing or even an issue with mast cells getting out of control.   I don't know.  I may be making another trip to Utah in the next few hours. It's been an upsetting morning.

It's just another frustrating setback.  He's signed a year contract on his apartment, started a brand new job and now never fails.  The poor kid tries so hard to get ahead in life.  He is constantly met with struggle and his health.  I feel so sad for him.  He works so hard to see his dreams manifested.

I came home kind of sick with my Lupus nonsense and today has been worse for me too.  I've tried to find someone to cover my organ playing at church and the temple but that is impossible.  That's why I have a love/hate relationship with this calling.  It's all great when I'm there but when I have to take care of me or my family, there are no options.  Today, even breathing hurts.  It feels like I have broken ribs.  My inflammation is through the roof.  I hate feeling trapped.  It's not like everyone and their dog plays the organ.  I shouldn't complain because we have been blessed this week in many ways.  Just tired I guess.



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