Tuesday, November 3, 2015

The Blessing of Bad Luck

The past 36 hours have been incredibly frustrating, chaotic, perplexing, maddening, exhausting, sad and full of blessings.

Spencer got really sick Friday night.  He has been steadily declining.  When blood showed up in his stool on Monday, I knew without a doubt we were in trouble.  All day Monday, I stewed about what to do but really, I had no clue.  I didn't know if this was something new or just the same old disease process we have been dealing with this year.  I talked to him at around 4:30 that afternoon.  In that conversation, we went over anything that he had done differently in his routine, any sick people he was around, places he ate...He told me that everything was pretty much stats quo until after dinner Chipotle.  At this point, I had no idea Chipotle was in the midst of shutting down 43 restaurants due to an E. Coli outbreak.   I hung up with Spencer and got lost in my mom world of trying to fix him, while I stirred dinner.

Shelbie came in about 30 minutes later and asked if I had heard about Chipotle?  She read me the story and still, I thought...wow, that stinks!  A few minutes later, it hit me!

I called Spencer and I told him to get to an urgent care as soon as work was over because I suspected he had E. Coli.  In my mind, I was waffling between thinking I was jumping to conclusions and maybe this is really what he had.  If Spencer does have E. Coli, he will be the first reported case in the State of Utah.  What are the odds of that?  That is bad luck...on top of our already growing pile of bad luck.

Next thing I knew, he called me from the ER.  The Urgent Care doc said he was way too sick for their clinic.  She called ahead to some random hospital which I had never heard the name of and sent him over.  I might have panicked when Spencer called me.

By now, it was 10pm.   I asked my home teacher to give me a blessing so I could cope.  In the blessing, I was told to open the scriptures and the answer would be there.  About 1am, I opened the scriptures and read a verse that said, "pray for wisdom and understanding."  After I read that, Spencer called back, they had sent him home and didn't run one single test other than a CBC.  I was livid!!  I called the hospital back and a gave a mother bear chewing out to the nurse and ER doc.

I decided I needed to drive down there.  I didn't tell him I was coming.

Early this morning, he called me and said he was so sick, he had tried to go to school but he just couldn't make it through the day.  I think he was surprised to hear that I was just an hour away and would stop and pick him up at school.

As I rode the elevator up from the parking garage to meet him, there was a piece of paper on the wall of the elevator...This is what it said,

 "Wisdom is the power to judge rightly following the soundest course of action based on knowledge, experience and thinking.  What good is knowledge without the power to judge rightly?  Knowledge for its own sake is not good enough.  We must know of things as they really are and really will be.  We must be willing to pursue truth from all sources."

This quote was the theme for the day...very much a tender mercy, a postcard from Heaven.

However...as the day wore on, things got crazy!!  I couldn't find a doctor to fit Spencer in.  It was weird, I chose one and then called and either they were out of business or didn't answer the call or they weren't family practice docs like it had said.  I then looked up urgent care clinics.  We drove to one and it was boarded up.  We drove to another and it was in this dead end back alley!!  I was beside myself!   I stopped in that dead end and put my head in my hands and had me a good little cry.

Then, I told the kids that we needed to pray.  I prayed fervently and intently, pleading for answers and direction to find a doctor that would take care of Spencer.  After that prayer, the most amazing things happened.

I opened my phone and this time googled something different.  The first clinic that showed up, I called.  I spoke to the nurse and explained our plight.   She said, come right over.  We have no patients at this time.

We pulled up and this was a major, well known clinic...just not known to me.  It was close to University Hospital. They took Spencer right back and within minutes, this woman in a beautiful black suit walked in.  Dr. Haggart.  She was amazing right from the start.

She listened.  I told her I felt that Spencer had E. Coli and I told her why.  She looked up Dyskeratosis Congenita, she ran all sorts of blood work to check his counts, liver, kidney and pancreas.  She also did stool studies and cultures. The other thing I was worried about was pancreatitis or a blocked bile duct.   She said that all of those things were possible but given the fact that he has so much blood in his stool, she believes we are dealing with a major bacterial infection like E. Coli.  The symptoms Spencer has are textbook for E. Coli.

She then said, "We need to get you established with some doctors here and then you can sleep at night.  I know what it's like to have your son off to school.  You will never stop worrying unless we get you some good docs!  So, I am going to call my own physician.  She is an Internist and specializes in Infectious Disease and let her know you will be coming in to meet her.  Then I am going to call my own Gastroenterologist.  He loves to research rare diseases and has an excellent bedside manner."

I asked her if she could be Spencer's regular doc and she said, "No, I'm just an urgent care doc and really, I am rarely at this clinic.  I'm here maybe once every two months.  I don't even live her."

I think my jaw dropped.  It was like God picked her up and dropped her in this very location on this very day at this very time just to get our little world organized!  I have been trying to find doctors down there for two months with no luck at all!!   In 10 minutes, she had us set up.

Now the difficult situation we find ourselves in...

Spencer does in fact have a serious bacterial infection.   They can't give him any antibiotics because if he does have E. Coli, antibiotics cause a deadly toxin to be released from the bacteria and it goes directly to the kidneys and kills them.  They won't have the bacteria identified for 2-5 days!

Because Spencer has a condition called Chemotaxis, his white cells do not move to attack viruses or bacteria.  In fact, his white count is completely normal.  Now, if you or I had E. Coli, our white count would likely be in the 20,000 range or higher.  We would have a fever as sign that our body is mounting a fighting response.   Spencer has no fever.  Essentially, this bacteria is running rampant.  He is dropping weight like crazy and he is in significant pain.

The hardest thing in the world right now is to hold a place open for Hope.  A place where despair and discouragement can not dwell.  It's hard to not be afraid.  It was so hard for me to drop him off and leave to come home.  So hard for me to see him so sick and so uncomfortable.

You know Spencer is sick when he says things like, "At this point, a colostomy bag would be a welcomed relief."  or "I just can't do this anymore.  I need to be in the hospital."  At this point, there are no plans to hospitalize him but, I have yet to check in with our Oncologist.  We need to do more to support him.  I'm just not sure what...but he is in God's hands.  I have prayed for angels to watch over him and no matter how far he is from me, he is the same distance from God.

Any additional prayers on his behalf would be welcomed.  We are going to need all the heavenly help we can get.


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