the ten percentile

Almost a year ago, I was sitting with my daughter late one night in the ER at OSU.  She's had several health issues that she is way too young to have, and even though I was in the  middle of my radiation treatments, I volunteered to put on a mask and sit with her so her husband could go home and tuck two scared little girls into bed with a daddy's reassurances that everything was going to be OK.

Only, everything was not going to be ok - life had taken an irreversible turn - again.

She was needing a diagnostic spinal tap to determine why her optic nerve had suddenly gone a little crazy causing her to lose the sight in one eye.

When the very young, and a bit cocky doctor stepped into her ER booth, he explained the procedure to her and I was a bit surprised that they were going to do the spinal tap there - in a booth that smelled of urine and on a bed I was pretty sure was not the epitome of sterile.

I chatted with him a bit, and he didn't have to be a Sherlock Holmes to notice my lack of eyelashes, eyebrows and winter hat covering my hairless head.  I asked him if I could stay in the room during the procedure and he said "of course".

He went over the warnings of possible problems, then glibly said "those never happen, though".  And I told him what Scott and I had determined several years before after hearing several medical professionals stating "wow, we're sorry, that hardly ever happens"....

I told him, only half smiling, while pointing back and forth between Heidi and myself, I told him "you realize, we are the 10%".

The first time he tried to get into her spinal fluid, he couldn't.

I had turned on my "medical-brain", while switching off my "mom-brain" and watched.  I watched as he tried several more times, then I watched her blood pressure dramatically drop, watched her body start dripping with sweat, watched her pass out, and watched the doctor lay her over on her side a little alarmed, and then I watched him abruptly leave the room.

My medical-brain was a bit stunned, a bit pissed at his departure leaving a nurse to clean up his mess, and a bit alarmed that the nurse said he was going to try again.  My mom-brain that had switched itself back on, was feeling the same way.

I know an arrogant-medical-ass when I meet one.

After her blood pressure normalized, and the sheet drenched with sweat was changed, he poked his head back in and said he would try again in an hour.

An hour later, I counted 19 pokes.  Nineteen pokes into her spine.  And those were the ones I counted - I probably started counting at four or five.

I wasn't so sure he was being absolutely sterile - he would poke then pull out and look then poke again.  He was gloved up, but gloves are no more sterile than fingers once they touch non-sterile surfaces.  I wasn't so sure anyone should do that many pokes in ANY spine.  I wasn't so sure he was continuing because he needed the medical test results, or continuing because his ego wouldn't allow him to stop.  

I had to stoop down and sit, because my medical brain was screaming "STOP", and so was my mom-brain.  I was not on top of my game mentally, or I might have spoken out loud.

He finally tapped the spinal fluid, found it to be "good", and left the room.

I hope I never see him again.

I have said this many times, and said it again that night.  I said, "I think you would have received better medical attention at the vet clinic".  I know at least 16 veterinarians that were more careful with needle sticks into a vein, than this medical doctor doing needle sticks into a spine.

And, I know, it would have been more sterile.

***

I want to create a sign for our family to wear into any doctor's offices, hospitals, emergency rooms - it would read something like this "WE ARE THE 10%".

It's not paranoia.  It's happened a few too many times to tape that over the sign.

Knee surgeries, gastro hospitalizations and surgeries, thyroids, lungs, brain tumors, and even cancer.  All of those came with a surprised wry smile and the tag line "this rarely ever happens".....

While Scott was at the Cleveland Clinic, he claimed one even better - he was placed in the "one-percentile" group.

Whatever the reasoning, we have been included in more than a few medical mishaps or mysteries or downright negligence.  

Through it all, we have probably met some of the worst in the medical field, but on the flip side of that coin is the fact that we have also met many of the best in the medical field.

Having that much unwanted experience, has led me to have little patience with the arrogance and negligence that you sometimes run into with the medical field.

It has also allowed me to see the differing reactions to different problems.  Cancer is high alarm.  Cancer is "all guns on deck!"  Cancer is like a locker room before a big football game - everyone is anxious to get into the game and work hard and fight and win.

On the other hand, bring up something like thyroid, or auto-immune, and you will see 92% of anyone in the medical field's eyes glaze over and you know they are counting the minutes before they can abruptly leave the exam room.

As high as cancer is on the alarm scale, auto-immune is that high on the frustration scale.

There hasn't been enough research on it, there hasn't been enough teaching in medical schools about it, there hasn't been enough tests to find it and tag it, and cure it.

When the words auto-immune come up, doctors just seem to want to roll up in the fetal position for a while.  They know this patient is never going be an easy diagnose - dose - cure patient.

I've dealt with auto-immune issues, and sadly, my daughter has had to deal with auto-immune that has had alarming and scary side effects.

And now, the deepest of griefs, her daughter as well is dealing with it all.  She is much, much too young.

If you say the words "inflamed optic nerve" in my hearing, I usually immediately sit down, because in my experience, hearing those words has been followed by the words "brain tumor" or "lost vision in one eye" in one I love more than my own life.

I got the phone call yesterday, that one so, so young, had been given those same words.  The dreaded words "inflamed optic nerve" were used in a sentence with her name attached.

My sweet granddaughter has been to the doctor too many times already.  She has been misdiagnosed too many times already.  She has had to endure tests that she didn't understand too many times.

She fights savagely after stepping through the threshold of any doctor's office.   I've been told she has a mean exam-table-reaction-kick that can render male doctors childless.

She is already on a extremely careful diet that causes her to eat her carefully packed lunch almost alone at a secluded table at school.  She knows what she can and cannot eat, and turns down birthday cupcakes, Halloween candy, McDonald's chicken nuggets regularly.

She sits at a special desk that has an ear piece in her classroom so she can hear the teacher.  She hid in her closet and cried the first day of school this year - she was afraid the other kids would be mean to her.

She's an over-comer that one, though.  Her teacher says that she is a leader in her class and well-liked.  She's kind and empathetic to her core but will come out fighting when she sees injustice.

She has been told that she can't do soccer - which she loved.  The same girl that worked so hard to be able to grab across the monkey bars at the park was told she can't do any sports where her head may be injured.  She has been told she can't eat more than half of what most kids love.  She has been told she has to endure test after test after test.

And she is still the sunniest, happiest kid.

She has been listening to Anne of Green Gables lately, and when I stayed with them recently and we were alone, she asked me sadly one day if I "had a life-long sorrow"?  Anne of Green Gables claims that her life-long sorrow was to endure her red hair.  Addy clamped onto that idea and has been obviously turning that question over in her brain.  When she asked me - I wanted to cry - how could I tell her that my lifelong sorrow was to see her or anyone that I love, suffer?

***

When Addy's mum called me yesterday after her eye appointment, and said the words "inflamed optic nerve" attached to her name - I immediately cried out to God.  No!  No!  Please, God, No!

I laid awake almost all night, praying.  Praying.  Crying out to the God of the universe that created our smallest cellular structure - I prayed that God would move in that young girl's cellular makeup.

For those that don't know, an inflamed optic nerve can mean a few things - many times it's a precursor to MS.  In the case of our daughter, it pointed to a brain tumor.  Then at a later date, it caused her to lose sight in one eye.

I grieved that deeply.  Heidi has lost so much - her health, half of her sight, half of her hearing, her vigor during youthful years, and her symptoms rarely give her rest.

We are so thankful for good doctors that have diagnosed her accurately after years of missed diagnosis, but so grieve the loss of what should be the strongest, healthiest years of her life.

She handles it all well, but as parents, we don't want her to have to 'handle' anything.

After all that, when I got the call yesterday after Addy's eye appointment, I fell down before God.

We were all scared, because it hasn't turned out so well previously.

***

Germans are an odd breed of people.  At best, they have the most orderly, most perfect lawns and gardens.  At worst, they are distinctively distant, untouching, unflinching, unloving.  In the prior century of world history, they wreaked unnecessary havoc, and that list of attributes helped them claim the award for the most atrocious war crimes known to mankind.

Some historians note that the ancient Romans used the brutal shoulder-length-blond-germanic-mercenaries in the Galilean area before the time of Jesus.

Eye doctors tell us today, that those with german heritage sometimes have chronic inflamed optic nerves.  Chronic inflamed optic nerves that do not break with MS in a year.  Chronic inflamed optic nerves that could or could not cause problems later.  Chronic inflamed optic nerves that need to be pampered a bit to keep them from causing headaches or becoming more inflamed.

In the big scheme of things, hearing that a wee loved one has a "chronic inflamed optic nerve" is the best news we could have heard this morning.

The best of the worst news ever.

And we pray, that in her lifetime there will be answers and help on how to relieve this problem without dire consequences.  We pray for a complete healing for her.

She has had to learn to "live suffering" way too early.

I pray that the medical field will grow and enlarge in it's efforts to combat and cure auto-immune disorders.

In the meantime, I have a first hand, first grade example of how to deal with medical problems that just won't go away.

She's pretty awesome, that Addy-girl.