Tuesday, April 10, 2018

Ball of Stress

Stress kills...I'm convinced of that more than ever.  That means, at the rate things are going, I have about 3 weeks left of life. 

It's been a stressful few days. 

I have been trying so hard, harder than I have ever tried before to just leave things in God's hands.  That's hard work.  I'm telling you.  Hard. Work.

It's always a struggle to balance the act of a gracious surrender with the overwhelming feelings of anxiety and worry.  I don't do this well, but I try. 

I have often joked that if jumping to conclusions was an Olympic Sport, I will have earned me a few gold medals.   This whole kidney failure, bone marrow biopsy, small bowel cancer theory, broken bones and the whole 9 yards is wearing on me.   I've tried to do what I can to get Sam an appointment with a Nephrologist in Utah but I have been running into incompetent people, forgetful people and people who won't break protocol.  It's so frustrating.

I finally called our family doc again today and they had no record of everything I spent Friday doing- in their office!!  In person!!  Of course, the guy I left instructions with wasn't on shift Saturday through today and no one got the records from the hospital or sent a referral.  Utah won't do a thing until they have all that.  I was very patient as I explained again, what was happening. The hospital social worker assigned to us by the ER doc completely dropped the ball.  I've never heard from her. The nurse at our Doc's office said she would call for the records and I made her promise to call me back within the hour. 

She did even better.  She called me back in about 15 minutes and said our doctor got onto the hospital server and looked at the labs.  He is 'extremely' worried with the results of his blood work.  I told him that Nephrologists were booked out 5 weeks at least and asked if he thought maybe we could wait til then...ya know, if Sam was his kid...what would he do?

"Get him to the ER in Utah.  He doesn't have 5 weeks to wait."

I was doing really well until he said that.  I always wonder if maybe doctors make mountains out of molehills and I keep jumping through their hoops, but I could tell he too felt we are in a serious situation. 

I am lost.  I have never struggled so much to know the right thing to do.  It's as if Heaven is out to lunch and no one is minding the desk!   It's frustrating.  I get even more frustrated that I am so frustrated.   I guess, my plan is to call the U first thing in the morning in hopes that they received everything they need and pray like crazy they will say...'bring him in today'.  If they don't say that, then I am taking Sam down with me for the PET scans and I will take him to the ER. 

I feel sick and sad and really quite worried.  It all happened so fast, in the midst of so many other big and disturbing things.

In Shelbie news, she's been running a fever since Sunday.  Nothing too far over 100 but it's been constant and steady and doesn't change with Tylenol or Ibuprofen.  The surgeon and his team have been great!  They took all the appropriate precautions for immune-compromised people having surgery and it's not likely she has a finger infection.  We are watching for streaking etc...nothing so far so she just gets to be miserable and bounces between hot flashes, night sweats and chills and shaking.  With the PET scan to monitor for Lymphoma coming up on Thursday, these symptoms are unnerving. 

Spencer is doing okay post biopsy.  He actually found a free lance gig yesterday at the University of Utah filming a commercial.  He was moving equipment back and forth from his car to the top floor of a large building and got stuck in the elevator.  Apparently, there was a power surge on campus and it took out several elevators.  He was stuck for over an hour.  He had only reserved the venue for two hours.  The call button in the elevator was broken so there was no way to alert the campus security so he had to call 911.  What an ordeal...just another thing to go wrong for the kid who tries so hard to do everything right. 

I will try to write more this week as things will be happening fast...another week of all three kids in the hospital!  I just can't believe it!!

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