Thursday, April 3, 2014

An overdue story and our "new normal"

It's been a rough week.  Well, maybe that is the understatement of all time here.  To do this I am going to have to back this story up almost seven years.  It will help to explain the anguish we are feeling here in this house at the moment over our puppy.  If you can not handle a sad tale you should probably stop here - right now, it's not too uplifting.  I do promise if it gets that way (happier) and I will post that too.  This part of the background is bad - but it could be worse and you thank the heavens for small favors - I have - I do - and I am grateful beyond belief.

Since I have never told this tale and only a few close friends know of the ordeal he (darling husband) went through I figured this post ought to have the background as to why what is happening to Daisy is so upsetting on so many levels.  Even friends don't have all the down and dirty details and it would take a book I'm not allowed to write to put them here.

So lets start in 2008/2009.  That was the year my husband had a debilitating pain down his right leg while participating in an art show near Grand Rapids.  My DH was a master toymaker - sold his toys all over the country at the finest of art fairs and wholesaled them to fine baby shops.  At the time, Little Seed - (Soleil Moon Frye's baby store in LA) and a beautiful upscale shop in Toronto.  Several others I can not remember.  He maintained a large studio facility behind our home - air conditioned and heated.   Not a factory by any means but not fly by night either.  An artist's wood working studio.  That's the background. 
Daisy, getting "Dad" out into the sun
This pain was so severe he called home.  He could barely rise from his chair and was not sure if he would make through the weekend.  Family (son's/ daughter/ myself) were all ready to run to his aid.  He asked us to delay this - what a prideful person he can be.  We were lucky as he had lots of friends (other artists) at the show who aided him all weekend and helped him to pack up following the show.

On Monday I phoned our physician and we ran to her office.  The pain was excruciating and they immediately put him on major pain modifiers while they ran tests.  The pain killers didn't do much to modify the pain (I understand medication - 23 years as a substance abuse counselor will do that - and he was on the "big" ones).  This particular man was used to wielding large amounts of hardwood and was quite physically fit.  Also no wimp and not a complainer.  He's a fellah without the grace of a grand education but gifted with talents for building with wood, creativity, and much much more.  I am a lucky girl.  My father called him, "a man's man".  He meant he is a great husband, father, and person.  I couldn't agree more.

After a great deal of testing (this saga started at the end of September 2008) we ended up at a neuro-surgeon.  There was a bone fragment that had calcified near a nerve and needed removal immediately.  That surgeon was to do that surgery.  Then, supposedly, he fell and dislocated his shoulder and could not do the surgery and we were referred to his partner.  The partner declared that the aforementioned surgery would do no long term good to relieve DH's chronic back pain and recommended a spinal fusion.  It was now nearing the end of November.  




Daisy, taking up permanent residence in Trudy's heart too.

After two full months of that kind of pain you'd give up your house to have it repaired.  Remember, all this time he is in a blur of medication.  He can barely walk or sit - clear thinking and relief              is no where in sight for him.  He just wants the agonizing pain to stop, by any means necessary. 

We schedule the surgery - It is in the first week of November.  It IS supposed to have nearly immediate results in the pain level.  That didn't happen...it worsened.  We told nurses at the hospital something was wrong - told the doctor.  Refused physical therapy more than one day.  No one much listened.   Upon release from the hospital we visited our family physician who was becoming alarmed.  Mid-stream of retesting and being "blown off" by the surgeon who did the operation DH developed a blood clot in the leg.  We had also gotten emergency CT scans and so on - these were sent to our physician as well as the neurosurgeon.   At an appointment in December she (family doc) literally took me by the lapels on my jacket and told me we needed a new neuro-physician and needed them NOW.  DH was still in the hospital with the clot. 

She began the process of searching for a physician who would take his case.  Luckily, my daughter-in-law works at one of the finest hospitals in Michigan...Henry Ford.  Literally, no one wanted to touch someone else's work (the surgery).  But, DIL knew people - who knew people and they were going to move DH from the hospital he was in to Henry Ford.  When the hospital he was in found out - well, voila - near immediate discharge.  And then an immediate (next morning) appointment at Ford's. 

The first surgeon at HF paled at the sight of the scans and info.  He asked us to hold on while he conferred with a colleague.  Turned out the colleague was the head of neuro-trauma surgery and asked to take the case.  He asked how my DH felt about being admitted to the hospital - immediately.  We were relieved to have someone who actually could see the urgency of the situation.  It's now December.  We've now three months worth of agony.  He was admitted right then and given a room.  Five days later, despite the clot (a filter was inserted to prevent a future clot) they opened up his back a second time.

Insurance, I think, is a heavenly gift if you are lucky enough to have a job that provides it.  I did and kept working.  Used up sick days and vacation as we progressed through this maze of appointments and hospitalizations but kept moving - - - you have to keep moving.

It's the second spinal surgery in just over one months time.  I am told to expect my husband to be in that operating room from 4 to 12 hours.  They would not know how bad the damage was until they were in there and would be altering their surgery as they went for the most optimum outcome.  They talk like that, don't they?  Surgery ran over five hours.  When they came out we found out some grim news.  DH had been within days of possibly being paralyzed.  To quote the doctor he felt as if he had just witnessed a miracle.  Two out of three pedicle screws were inserted wrong into the cage and one had traversed the spinal canal.  It creased the thecal sac on one side and trapped the nerve that runs through it on the other.   It was a miracle it had not severed that nerve or pierced the thecal sac.

They removed the "medical debris" and since there had been some healing and the spine could support itself he was to remain on a steady path to his "new" recovery.   They also reported some foreign substance had been used between the discs and had caused other bulging that they repaired.  It was stated to us they didn't know what it was and they thought they ought to since they are a teaching hospital. They thought they should of seen this material before...they were baffled.  From this point on we began a very arduous journey.

And how did that new recovery go?  We deal with what we call the "new normal".   The nerve is damaged - irrevocably to the end of time and the spinal column is forever damaged.  DH can not lift, walks bent over.  During this we cancelled art shows and contracts with those businesses.  We sold our remaining stock on Etsy.  It's been what - five years now.  He spent nearly three trying to recover.  Lots of time and PT -  moving from walker to cane to walking.  We are enormously grateful for that and to Henry Ford Hospital and it's wonderful Health System.  You thank God for the blessings you are given not the shortcomings you are left with - right? 

I should maybe explain the new normal a bit.   Our dream was for me to retire and us to take the business around the country to visit locales and have a wonderful time.  Plans change.  Even now he can not walk the length of a Walmart without the aid of a shopping cart.  The pain will overwhelm him if he tries - he walks slightly stooped.   There is no going back to work, recovery is over, pain is a fact of everyday life, there will be no new career (too many maintenance medications).  He sleeps in a hospital style bed that never sits flat.  An improvement over the old front room recliner he slept in for a long time.  So much continuing medication it can be mind boggling and at times, for him, it is.  Total per month with insurance - about $200.  Without it would be thousands.

But, again - we are lucky.  Our home is now free and clear and we have that insurance.  Comparatively, in this world, things could be worse.  We are grateful they are not.

Now, I know you are going to want to ask - did we sue - yes.  That took about five years.  A lot happens in that amount of time - we will talk about that.  Did we " make out like bandits" from that suit?  No, we did not.  It is less than I would have made working for two years (a whole different chapter) but it caught up outstanding bills, and so on.  You do what you have to do, right? 

So here we are with the "new normal" and we had begun the adjustment.   Sorry - legal issues preclude me from giving details beyond what I have said.  We live in a don't tell system and are bound by that.  I can't and won't.  Makes me think of the military during don't ask - don't tell.  You have to think to yourself - ah, just who was that set up to help?  Please, there are plenty of things to feel bad about in this world so do not grieve for this too.  We did the best we could under an awful set of circumstances and have spent a great deal of time moving forward.

And this bring us to 2011 - huh, I better get a move on with this story of mine...maybe tomorrow.

2 comments:

Lela said...

What an ordeal! I can't even imagine... :-/

Sharon Driscoll said...

Thanks Lela - I was sitting on this for a long time. I'm a optimist so I just keep going forward but I needed to revisit this one for the feelings it drudged up when we found out Daisy was hurt. Time has healed this - you can't cry forever.