Thursday, February 9, 2017

Seek First to Understand

Things went downhill so fast and so hard.  After the two events yesterday, I thought that might be the extent of our excitement for this trip.

Just after 1 am on Wednesday, Shelbie felt horrible and I found her laying on the bathroom floor.   It wasn't much longer that she started violently throwing up.  I was so worried.  I've never seen anything like it before.  It went on and on.

That started a domino effect. It took until 7 am before any of the anti nausea meds or pain meds started working. It was such a long night...in a hotel room with very few resources and the poor thing is still connected to 30 wires and isn't allowed to shower or bathe until Thursday night so being this sick with all this other stuff going on really sucks for her!

She slept until about noon.

By 1 pm, she was crashing again and I thought we just needed to get to the hospital.  She could hardly walk and pain radiated from the top of her head to her toes, straight down her spinal chord. We sat in the parking garage, in the car while I made calls and sent emails to some of our doctors.  A nurse called me right back after I left a message and said that the doctor wanted Shelbie in the ER with a neurology consult.  I was really angry!  I hate the ER and it seems like we go and they just end up scratching their head because we overwhelm them. It's been a long time since I was so angry actually.

 I found a wheelchair, loaded her up and we went straight to the EEG lab.  It was shocking to see the condition she was in, slumped in the wheelchair, compared to the day before when she was fine.  They were really good with her.  Oddly enough, we had the same tech we had when Shelbie was inpatient at Huntsman back in November with her stroke.  He remembered her and was so kind.

This picture absolutely kills me.


From there, we went down to the main doors to decide what to do next.  The thing that kept running through my head from late the night before, to now, was 'Seek first to understand.'.  So, instead of being angry and upset, I took her to the ER.  Low and behold...they got her right in!  We bypassed the packed waiting room and went straight to a trauma room.  We had to share the room with a man who came in a few minutes later suffering from a Heroin overdose but they started Narcan incredibly fast and the guy was out.  I was actually afraid he had died.

So, there's Shelbie and Don- the heroin guy and wouldn't you know it...the guy on the gurney outside the door was the same crazy, angry, cussing man from three weeks ago!  What the heck are the odds?  I tell you, this can not just be a coincidence!  Seek first to understand.

The ER doc came in swiftly, did his assessment and a nurse parked herself at the end of the bed keeping a close eye on Shelbie. They got an IV started and pain meds on board and soon she was sleeping peacefully...and so was Don and the guy outside the door was calm for a change!

And...wouldn't you know it...I was shocked to see who came through the door next.  The neurologist!  Not just any neurologist...the same one who said to my face in November, at Huntsman that Shelbie's EEG was textbook normal!  I saw his face and as he introduced himself again, all I could think of was cramming his stethoscope down his throat! But the words pounded in my head...Seek first to understand.

I don't know exactly why this week has unfolded the way it has.  It's strangely purposeful and profound.  I keep thinking that it's good all this happened while Shelbie's brain is being monitored non-stop.  Maybe there are answers to come because of all this.  As for Dr. P, the neurologist, he was singing a different tune today after reading over his own lousy notes from November and the notes of our new Neuroimmunologist and seeing that there really is something desperately wrong with this girl and it's far from textbook normal.

He and I actually ended up having a good conversation that I think we both learned from.  He finally admitted that Shelbie is a little out of his realm of expertise but at the same time, provided me a good starter education on seizures, strokes, multiple sclerosis and central nervous system dysfunction.  I was 'proud' of him for consulting several other neurologists before dismissing us.  His exam showed some distinct differences in Shelbie's sensation between her lower extremities and upper as well as side to side.  He asked her an interesting question- if she experienced frequent Deja Vu to which Shelbie answered yes!  Which was shocking to me.  Deja Vu experiences have a direct correlation to Temporal Lobe seizures and those kind of seizures have GI side effects like vomiting and can damage the brain in patterns we have seen.

At this point, we don't know what is happening to Shelbie but it's scary. Multiple Sclerosis seems to be back on the table as possibilities and that terrifies me!  They offered to admit her for observation but there are so many sick people there, she really will be safer at the hotel.  They loaded her up with Morphine and Zofran, put her back in a wheelchair and we left 7 hours later.  She left with a fever!!!  It just never ends.

So what about Don?  I've been really angry all day.  Partly because I'm exhausted and haven't slept since Tuesday.  Partly because I'm just scared and it's easier to be angry than to admit defeat as a mom, as a caregiver, as a provider...as everything!  When they wheeled Don in and he's literally right next to Shelbie and unconscious,  I hear his whole story as the docs worked to stabilize him.  He seemed like a good person to unleash my judgments and anger on.

'His filthy body and unkempt, greasy dreadlocks make me angry.  It's people like that I hate, who take up beds in hospitals, make insurance un-affordable for the rest of us and waste the time of medical staff who should be caring for real sick people...like the two dozen sitting out in the waiting room!' He doesn't deserve to be taking up a bed just because he can't make good choices in his life. Maybe he should try working for a living like the rest of us.  Maybe get up and face life with a little courage instead of wimping out with drugs"   My thoughts about this guy were ugly and very harsh and contrary to the kind of person I am. I don't know why...

But...I watched the nurses and doctors treat him with the same kind of caring they treated Shelbie.  They seemed to be full of compassion for him. The more I sat there watching them care for him, the more I was filled with love for Don and the more compassion I had for him and the more I could see that he was no different than me or Shelbie.  I know better than to think those things I did in my frustration.  I know better. I know that people who are lonely, lost, hurting and scared are turning to drugs like Heroin because they have no one else to turn to.  I know what that kind of loneliness feels like. In a lot of ways, his pain was far more remarkable than Shelbie's. We all have our vices and our sins may look to be at opposite ends of the spectrum but we all hurt, we all struggle, we all have 'our' thing that keeps us numbed out just a bit or a lot because life is hard and life is heavy!   Some of us have people who love us through and hold on to us for dear life and some of us don't...we go it alone.  Don was completely alone. Seek first to understand.

So, that is today in a nut-shell.  It was so hard!  So hard and so lonely and so scary.  I spent time in the same bathroom stall praying, that I did three weeks ago.  When the attending came in to let us know the plan for the night, I left to get to the hospital pharmacy before they closed.  As I stood there, I was really wishing I knew someone I could call to give Shelbie a blessing.   About 10 minutes later, three men walked past in polished black shoes, white shirts and dark suits.  I didn't see their faces but from the back, I just knew they were leaving the hospital from giving a priesthood blessing.  I called after them but didn't dare leave my place in line to chase them down since the pharmacy was closing in 10 minutes.  They didn't hear me.  When I got back to Shelbie, she said, "I would do anything to have a blessing."  Another epic failure for me.  I should have acted on that prompting at the pharmacy.

Seek first to understand.  While I have had a tremendously hard day in a million more ways than I have written about today, I will continue to hold on and be led to the next best thing for Shelbie.  I know without a doubt that everything that happened today had a point and a purpose.  There is no waste in suffering.

On a merciful note...one of the ER Co-ordinators is the grand daughter of my very good friends, the Wests.  I took care of her grandma who passed away from complications of Multiple Sclerosis and then watched over her grandpa as he struggled with her passing and diabetes complications.  Shelbie took A's photos for her modeling portfolio.  I ran into A as I left to go to the pharmacy.  She gave me a big hug and kindly offered to sit with Shelbie til I returned.

God is good and I don't always understand what he is creating in me but I will keep trying to understand.


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1 comment:

  1. Such a tender post. You guys definitely go through a lot but you are always gracious and willing to look at the good in the world. We sure love you and your family!

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