Thursday, November 5, 2015

Faith Alone

I was told in a blessing I received when I was a teenager, that someday, I would have to live by faith alone.

That day is here.  And it's not easy.

I decided that instead of driving back to Utah last night after work, it would be wiser if I tried to get some sleep.  I've been getting a virus and I was wiped out.  Spencer felt more comfortable that I was going to wait too.  He was tired and I assumed he would sleep and I would sleep and we would connect today.

About Midnight, he Facetimed me and said he was covered in hives.  I tried to connect with some of my medical friends, did some research and actually had a friend down in Texas helping me research.  The progression of E. Coli is a rash that looks like hives but it is a sign of kidney failure.  She found the same story at her end.  I had to make a quick decision what to do for Spencer.

If he was going into kidney failure, it can happen fast.  I decided to be cautious and sent him to the ER.  

The problem is, E coli takes 2-5 days for it to culture.  Today is only day 2.  If he ends up having E. Coli and we start treating the C-Diff with antibiotics, we are almost decidedly signing up for major kidney problems as the toxins inside the E. Coli bacteria will be released in his kidneys.  If we don't start treatment soon for the C-Diff, he is in serious danger of a bowel perforation.

Spencer called me each time the doctor came in.  They tested his kidneys and they seemed stable.  The gave him IV Benedryl and wanted to start the treatment for C-Diff.  They wanted to give him Flagyl.  I already this conversation with the Infectious Disease Doc and asked that Spencer not be given Flagyl.  It destroys the mitochondria cells.  Spencer has enough mitochondria issues, we don't need that on top of everything else.

They gave him Flagyl instead of Vancomycin like we talked about.

Needless to say, It was a long, nail biting three hours as I sat on my bed, staring at my phone waiting for news.

They released him!  I am so sick of hospitals kicking this kid out!!  Apparently losing blood, weight and excruciating pain isn't enough for a hospital admittance.  By the time he got home, he had extreme pain in his joints and the back of his neck hurt.  So...the next three hours, I worried about meningitis.  This morning, I was afraid to call him.   I didn't want to find out he was half dead in his apartment.  (Probably my tired brain...getting away from me.)

I slept for about 3 hours and left to come down to be with Spencer for these appointments.

I don't know what will happen today.  I am just really praying that they will admit him for supportive care; IV therapy, Nutritional Therapy and watch for more complications.  It's so hard working with new doctors who have no idea how sick my kids get.  They have no idea how devastating infections with Dyskeratosis can be. We never escape even something as basic as strep throat, without major complications.  Spencer's immune system is so poor.  I just wish they would listen to me!   Spencer is still trying to work and go to school.  It's insane.   He just won't give up.

The hives are spreading...a few on his legs but mostly just his trunk.
Not your typical hives...

We are at the point that all I can do is voice my concern, plead our case and then watch how God decides to handle this.  I can't micromanage this, or Spencer.  Maybe this is just a difficult case of C-Diff but what if it isn't?  What if we make a mistake in his care?  What if we don't do enough?  What if it's too little too late?   No amount of effort, wishful thinking, researching, reading, pleading, worrying is going to change the course that God wants Spencer to take.  Nothing but Faith.  Just faith alone.   As a mom entrusted with my kids life, I can only do my best.  In the eternal scope of becoming more like the Savior, this is where the rubber meets the road.

Have I learned all I needed to learn in the past trials to get through this?  Am I ready to live by Faith alone?  This is the test...the answers lie in everything I have experienced to this point in my life. I hope I pass.  I hope we can stay mentally strong, humble, hopeful.

At this point, the truth is, it's hard to not panic.  It's hard to not see how close we are to the edge of something huge.  It's hard to trust in a power I can not see but I know is there.

We will get through foot in front of the other.


1 comment:

  1. And there it is. Faith--one foot in front of the other, walking in hope.