10:00, 2:00, 5:00 and 8:00

So it all comes down to this:  our world was changing and it began in a little room in the surgical Intensive Care Unit.  I watched my husband breathe with the help of a machine, still unconscious from the medications, with an enormous tube pumping fluids out of his chest.  The room suddenly got really hot, and I fought the urge to faint.  Thankfully, my cousin was there, keeping me upright.  She suggested we go get a bite to eat, and I realized I hadn’t eaten all day.  I was reluctant to leave, but my husband’s nurse assured me I could come back in any time.

After eating and another visit to the ICU, I eventually settled into my room, where I tossed and turned for hours.  All kinds of horrible scenarios were spinning around in my head and sleep would not come.  Finally I could stand it no longer, and went to the ICU again at 5:30am.   True to his word, my husband’s nurse allowed me in.  Although he was still sedated, at least I was reassured that he was resting, and was able to go back to my room and sleep soundly for a few hours.

The first morning after surgery I was allowed into his room pretty liberally.  However, eventually my days began to revolve around the following times:  10:00, 2:00, 5:00 and 7:00.  No matter what happened during the day, at those times I was standing at the doors of the ICU, waiting to be let in.  A total of 2 hours each day.  I treasured those brief times and would move Heaven and Earth to spend every moment of them at his side.

I was able to spend a second night at the hospital.  Late on the third night, my youngest son and I arrived home….and discovered that our air conditioner was not working.  My in-laws were due to arrive from out of town at 9:00am the next morning, and my sister-in-law was also coming in later that day.  Nothing could be done at that hour, so we each sweltered under our ceiling fans, with wet washcloths over our faces.

Thankfully I was able to get someone to come right over early that Monday morning to fix the ac, and when I told him why I needed to leave by 9:00 (see paragraph above), he waived his rush fee.  As I waited for him to fix the ac, I decided to make coffee for my guests, only to discover that the coffee-maker was broken.  Afraid to touch anything else, I sat in my sweltering home and waited for 9:00am.

When dealing with a stressful situation, I think it is easy to compartmentalize things…maybe it is the body’s way of protecting itself, to keep from being overwhelmed.  You are suddenly able to super-focus, to do only those things that will carry you through the situation.  And you do it almost automatically.  The unfortunate consequence is that there will be important things that are missed.  For instance, the day after my husband’s surgery our son turned 21.  Several days after that, a beloved aunt of mine passed away.  It would be several weeks before my son got his birthday gift.  I was unable to attend my aunt’s funeral.  There was understanding and grace for my focus being on my husband….I would begin to pay more attention to these acts of kindness in the upcoming weeks and months, and they would help me cope.

The Wait

The surgeon’s voice seemed a million miles away as he delivered the news that my husband would need triple bypass surgery…immediately.  It was after 5:00 on a Friday afternoon, and his surgical team had just left for the weekend.  They had been called back, and would take him into surgery as soon as possible.  We would be allowed to spend only a few moments with him in the Intensive Care Unit.  By this time my cousins and youngest son were there, and I kept watching and praying for my oldest son to walk through the door.  In what would be the first of many times, I would put on my “Mom hat”, swallowing my tears and fears in an effort to be strong for my boys.  Although they were nearly grown, I needed to do what I could to keep them from being scared.  I had been doing it all their lives….today was no different.

By the time we reached the ICU’s main corridor, my husband was there, still very groggy from the medication he had been given for the heart cath.  As we talked to him, they were pushing his bed ever so slowly toward those mysterious double doors, trying to get him into surgery quickly, yet giving us the time we needed.  Finally, the person in charge began to say that it was time to go, and I begged for just another minute….I was still waiting for our other son.  Seconds later I glanced up at the hallway mirror for what seemed like the hundredth time, and saw him running up the hall….just in time, he was able to spend a few moments with his dad before they took him in to surgery.

The next several hours was a dizzying combination of surgical pagers, phone calls and butterflies in my stomach.  After I was issued my pager, the volunteer told me that they had a room available for me in the hospital where, for a nominal fee, I could spend the night.  I only had a few minutes to decide, and ultimately chose to take the room.  My pager went off 3 times…I was called when my husband was put on bypass, when he was taken off bypass, and then when the surgery was over.

Finally, the time came to meet with the surgeon.  The APS had made for some tricky calculations in getting the blood thinners right for surgery, and after a brief Google consultation about the disorder itself, the surgery had been a success.  As the surgeon said in the waiting room…it would be easier to mop up extra blood than to have the grafts clot.  I was just so grateful that everything had gone well.

The next step was the most heart wrenching experience of all:  seeing my husband, my protector….the one who had always taken care of everything….hooked up to a respirator with a tube coming out of his chest.  It’s an image I don’t think I’ll ever forget.

The Big One

The annoyances started out small, and in a comedy of errors that could only happen to us, we were once again blindsided in the Summer of 2011.  To further complicate matters, our attention had been focused elsewhere when the proverbial rug was snatched out from under us.  This time it was myself who had the medical issue.

Early in the Summer of 2011, I underwent brain surgery to occlude an artery that was feeding an abnormal cluster of blood vessels close to my left ear drum.  This meant that I was hearing my heartbeat non-stop (called Pulsatile Tinnitus) for nearly two years, and I was starting to get a little loopy from the strain, in addition to the dizziness and fullness in my head.  It was also something that could have led to a brain aneurism if not corrected.  I would soon learn how important it was to have it taken care of when I did.

We also had a couple of home improvement projects going on, and helped our niece move, all within a 3 week span of time.  So when my husband began complaining of a pulled muscle across his chest, we knew it had to do with either putting up the beadboard ceiling in the den or moving household goods.  For several days, he medicated with ibuprofen.  On the morning of July 22, he woke up and got ready for work.  He was irritated that the ibuprofen was not working on his muscle strain, and did not look like he felt well at all.

As I was clearing the kitchen, I heard him in the living room and went to check on him.  He was trying to bend over the back of the couch…and then tried to lean across the seat of the couch.  I did not have a good feeling about any of this, and asked him what he needed.  When he said that he just wanted the pain to go away long enough so that he could think of what to do, I knew I had to take over.  I told him to get in the car, and for once he didn’t argue.  In a blinding rainstorm we drove to the emergency room.

I was really concerned when they took him right away, although it still took several hours to get all test results back.  Eventually, the doctor told me that his cardiac enzymes were elevated, meaning he was either having a heart attack or had recently had one.  He needed to perform a heart catheterization to find out what was going on.  This news hit me like a wall of bricks, and I remember very little of what he told me after that.

The walk from the emergency room to the 3rd floor cardiac waiting room was a blur.  I could not believe my husband was having heart issues…at the age of 47!  I ran into one of my cousins, who was visiting someone on the cardiac floor,  just outside the 3rd floor elevator.  That we happened to be in the same place at the same time was a miracle in itself.  In the short walk to the waiting room, I told her why I was there.   In the meantime, my cousin who lives close to us had picked our youngest son up at home, and was bringing him to the hospital, while I frantically tried to call our oldest son to come to the hospital.   My family, whom I have known and loved since before our lives began, rallied around me…bringing my child to me, and encircling us in a tower of support that we would desperately need, as if our lives depended on it.

This sequence of events only took a few minutes, and with the ringing of my phone everything froze:  it was my cousin’s husband, telling me that the surgeon was coming in to talk to me any moment….and telling me to sit down.

 

Resistant Times Two

It is no exaggeration when I say that my husband was resistant to his first consistent treatment for APS.  When taking Coumadin, the patient has to have regular checks of his INR, or International Normalized Ratio, to make sure the blood is thinned properly and clots don’t develop.  It was already like pulling teeth to get him to the doctor, as it is for most men.  Now try telling him that he had to go to the doctor every few weeks.   He fought it like a belligerent toddler, and it became the main source of our tension over the next year.

Approximately one year after beginning his Coumadin treatment, my husband felt the familiar signs of another blood clot.  It was also in his leg, and it was an impressive size, at around 14″ long.  His doctors were baffled that he could be on blood thinners and still develop a clot.

I had lost my job the year before, while my husband was still in the hospital for the first blood clot in his leg.  The timing of my job loss was scary and very discouraging, since I didn’t know what we were in for with everything that had happened in the previous few weeks, and whether he would be able to return to work or not.   I missed my co-workers terribly, and the students as well.  The silver lining was that I was able to spend more time with him at the hospital.

After some complicated blood tests it was determined that the strain of APS that my husband has is resistant to Coumadin.  So despite an entire year of taking blood thinners, his blood continued to clot.  Consequently, we were very relieved when they found that Lovenox would work for him.    He was also relieved that he didn’t have to have his INR checked while on Lovenox, so it reduced the need for frequent doctor visits.  The downside is that he has to give himself daily injections, something that he does with very few complaints.  He was able to return to work, and we resumed our lives.  For a time we co-existed peacefully:   APS and Lovenox worked in clot-busting harmony.  It would be two more years before our journey would take a different turn and become more complicated than ever.

 

ICU Part Two

For the next 5 or so days, my husband was given blood thinners in an effort to thin the clots in his lungs.  We were told that the clots might take years to dissolve fully, and as a result, he was put on coumadin in order to continue the  thinning of the clots, and to keep more from developing.  Before discharge, he was given a doppler test on his legs, to make certain there were no clots there.   We were given the all-clear, and went home.

We were now dealing with the first significant treatment regimen with coumadin.  It required my husband to have his blood tested frequently to make sure his INR (International Normalized Ratio) was right for him.  If the number was too low, his blood would clot, too high and he was at risk for bleeding.  It was tough for him to get accustomed to having to be more proactive about his health, especially at his young age.

We had been home less than a week, when he began complaining of pain in his left leg.  It was difficult for him to walk on it, and was tender to the touch at some points.   Even with our limited experience, we knew that wasn’t normal.  And, of course, pain is the body’s way of telling us something is wrong.  We were puzzled, though, because he was now on blood thinners, so there shouldn’t be a problem.   He had been pronounced clot-free just a week before, so we couldn’t imagine what could be going on.   He made another appointment, this time with another group of doctors.

So for the second time in two weeks, I received a call at school and was told that they had found a sixteen inch clot in his left leg, and he was being admitted into the intensive care unit.  This time they did a procedure where they delivered blood thinners directly into the clot, essentially “washing” the clot with the thinning medication.  There was some danger that as the large clot thinned, it might break off into smaller clots.  At some point they installed an inferior vena cava filter (IVC filter), which is a device made of mesh that will trap blood clots, keeping them from entering the lungs.  We felt some relief knowing that he had this protection.  Once the clot was dissolved to an acceptable level, he was discharged from the hospital.  Once again, we jumped back into our routines, this time VERY grateful that we had dodged some very big bullets.  We celebrated our son’s graduation with a renewed respect for the gift of life and the blessings of family.

 

 

The Struggle to Breathe

The year 2008 would be a year of change as our firstborn prepared to graduate from high school.  We all felt the passage of time, and began measuring it by days and weeks, no longer by years.  It was gratifying to watch our son prepare for life away from home…we felt that we had given him a foundation that made him ready to take on the world, and he displayed the easy confidence that confirmed our feelings.

It was during that time, probably March of 2008, that my husband started feeling tired and ‘winded’ whenever he exerted himself.  We thought he had just gotten out of shape since retirement, and he and I began walking together in the evenings.  He really preferred to exercise alone, but occasionally allowed me to walk with him, and the hills and valleys of our neighborhood provided a very challenging training ground.  I began to be concerned that he was out of breath on a daily basis, and suggested he make an appointment with our family doctor.  Of course he put me off, saying time after time that he was just out of shape, and just needed to work out more.

On a mild spring evening in April, we set off for our walk, heading for the hilliest route.  As we approached the halfway point on our block, my husband suddenly began to struggle to breathe like never before.  He had to sit down for several minutes, trying to catch his breath, while I tried to decide whether to run back home and get the car, or stay with him.  I was not willing to leave him alone, so we very slowly made our way home.  It was during this time that I suggested that he call his best friend, a doctor, the next day….just to see what he thought.  I was desperate to get him to take just one step toward getting medical attention.  This time he agreed.

We had an uneventful night, so I got up and went to my job as a secretary in an elementary school, after getting reassurance from my husband that he would still make the phone call.   I often think of what our parallel mornings were like on that day….I was blissfully going about my workday, while my husband was alone, dealing with his most difficult medical experience so far.  After making the phone call, his friend suggested that he go see our family doctor.  They took him to an exam room and checked his blood oxygen level, which registered in the 60’s.  Normal levels are above 90.  The doctor immediately ordered a CT scan.

It was then that our parallel mornings converged into one blur:  I had just sat down for my lunch when my phone rang.  It was a radiology technician who bluntly told me that they had found pulmonary emboli….blood clots, in my husband’s lungs.  There were several of them, and at that moment he was being transported by ambulance to the nearest hospital.

I don’t know what I did or said, but I was suddenly surrounded by teachers.   Someone put my lunch away, and I was led into my boss’ office, where I told him my husband’s situation.  He offered to drive me to the hospital, but I felt I could make it there by myself, and within minutes was on my way.

The next several days were spent in the hospital’s intensive care unit, where he was given heavy doses of blood thinners in an effort to dissolve the blood clots.  At the same time, he was instructed to move as little as possible, to keep the clots stationary.  I felt my own blood run cold as I realized the seriousness of what we were dealing with:  one traveling clot could kill him.

Starting Over

After spending all of our adult life with one set of goals and ideals, as in service to our country, there is really no preparation for beginning the next phase.   My husband attended all the retirement briefings, and we were supplied with information on adjusting to civilian life.  However, when real life is not covered in any of the instruction manuals, how does one really adjust?

Through the years, I had developed a set of criteria for where we would spend our years after the Air Force.  My heart longed for a small town, with tree-lined streets, a flag perched on a pillar of each wrap-around porch, and white wicker laced with ferns.  The reality is that we had lived in Washington, D.C., the Rocky Mountains in Colorado, near Sea World in San Antonio…places where people love to visit, and where there was always something to do.  It would be a tough sell to convince two children to live in a quiet place where there were few activities with them in mind.   We found a compromise by living in a small town near a big city.  To sweeten the deal, I had a job offer, and we found a foreclosure fixer-upper in a very nice, established neighborhood.  The plan was that I would be the sole breadwinner while my husband put his home renovation skills to work on our new home.  

As is sometimes the case, those particular plans did not come to fruition, and we had to scramble around for a Plan B.  After all my efforts and training, and getting licensing to start my new career, my job offer fell through.  So we both renovated our home, and got our boys settled into school.  We looked forward to Mother’s Day, as it would be our first holiday to spend with our Moms, without having to plan a cross-country trip.

The events of that day were totally unexpected, and devastating.  During lunch, we received a series of phone calls  informing us that my sister-in-law, my husband’s oldest sister, was critically ill.  The waning hours of Mother’s Day, 2003, would find us at the hospital in complete shock, as we learned that there was nothing doctors could do to save her.  I’m not sure when it happened, but my husband was by her side when she left the bonds of earth.  

To say that he was affected by her death was an understatement:  the two had been very close, despite being twelve years apart.  He had spent many summers at her house, after she was married and began her family.  She had always been like another mother to him, and her loss plunged him into a major depression.  He was essentially immobile, and spent nearly an entire summer bedridden, while the boys and I tried to start life in our “new” home.   Although we still had lots of work to do on the house, by this time we were able to live there, making renovation a bit easier.

In July, we discovered that we needed to renew our tags on the vehicles.  Guess what was still in our household goods, somewhere between our new home and Texas?  Our car titles!  So, a good one to two months before we were ready, we had to have our household goods delivered.  We had to scramble to get new carpet put in, so our furniture could be moved in.  The presence of massive numbers of boxes only added to his depression, and it was a difficult time to hold everyone together.  I felt so terrible that the boys essentially spent a summer on the couch, while I tried to unpack, renovate and do whatever I could to take the pressure off him.  

Sometimes I feel that we failed miserably with keeping things afloat for the sake of our boys.  We were just trying to make it through, dealing with the clutter of our lives and the clutter that crowded our hearts and brains.  It was an exhausting time.  It is only just now dawning on me that my husband may have been feeling the effects of his illness in between the visible symptoms.  He was never very ‘energetic’…a fact that drove me crazy.  An early bird myself, I could accomplish a day’s worth of work before he even made it downstairs for his morning coffee.  I could never understand how he could sleep his days away.  Now I wonder if he just felt lousy all the time.  I’m not sure we’ll ever know if his lack of energy, and possibly how profound his depression became, was a symptom of his APL.

Eventually, he became well enough to find a job, and embarked on his second career.  I found work as a Substitute Teacher, and we settled into the familiar routine of school, baseball, work and improving our home.

What would come next was still a few years away, yet it would prove to be a wake-up call that would shake us to our core, and make us see this illness for the threat it really was.

The Diagnosis

The next few years were uneventful, health-wise.  We all survived the Y2K worries, with no computer mishaps to speak of, and found ourselves wondering what all the fuss had been about.   I don’t know why, when we view our lives through hindsight, we usually wind up kicking ourselves, but it’s true.  We want to jump back in time and get in the faces of our young, inexperienced selves and scream “Wake UP!!!  This will be a BIG problem later on!!!  WAKE UP!!”   Would it affect the outcome in a more positive way, perhaps given us more time between health issues, or made the quality of his life better?  In reality, we just think back and shake our heads, thinking, “If we only knew back then…”  What is the purpose of these episodes, and does it teach us to try to employ hindsight to our everyday lives?  Are we calling upon hindsight to just jump on in and take over, so we don’t have to weigh things on our own?  I don’t know why we torture ourselves.   At any rate, with the information we had at the time, we had no choice but to do what we could in the raising of our boys.  I guess life is like that.

In the Spring of 2001, my husband received orders to Randolph AFB, Texas.  So we left the beautiful state of Colorado, and moved our little family to a suburb on the outskirts of San Antonio.  The following Fall, our oldest began middle school, and our baby began kindergarten.  We began our regular routine of baseball, school, and just enjoying our family, while my husband settled into his new job, at what would be his last duty station before retirement.  The nature of my husband’s work meant that I could not know a lot about his job, or things we was working on, and I was fine with that.  I took a lot of pride in sacrificing my perceived need to know things in order to give our Country a capable, loyal Service Member who could focus on what he did for the good of this great country of ours.  I looked at it as my way of serving, too.  There will always be things that I will never know.  Or, as we like to say, I can read about it in 50 years when the information is no longer classified.

On that fateful day of September 11, 2001, our world, and that of our beloved nation, was torn apart as we watched the tragedy unfold in New York City, the Pentagon, and in that lonely field in Pennsylvania.  Of course, the events of the day meant that my husband’s schedule immediately went into overdrive at work, and little things about his health might have been ignored in the interest of national security, naturally so.  I do not remember any complaints of his that might have served as warning signs, I just remember the phone call, and that blinding feeling of panic and fear, as one of his co-workers explained to me that he had lifted a projector and promptly passed out, and was being treated at the clinic on base.

Later he would tell me that he had had episodes of not being able to concentrate that day, and his vision was not right…whacked, I think was the word he used, before he slid into oblivion.  Once again, he was sent to a neurologist at Brook Army Medical Center, and this doctor, after reviewing his records, ordered a Trans Esophageal Echocardiogram.  The results of this showed nothing abnormal, however, the doctor was intrigued by his medical history thus far, and vowed to find out what his condition was “if it’s the last thing I do!” 

Now, a new round of tests was ordered.  I’m not sure if the doctor was re-running tests for comparison, or testing for new diagnostic markers, but one day my husband received a call from the neurologist, and went in for the results.  At any rate, the doctor finally had a diagnosis for all the mysterious symptoms he had suffered over the last several years.  It was a condition called Lupus Antiphospholipid Antibody Syndrome.  Despite its name, the disorder is not a form of Lupus although it is an auto-immune disorder.  

This doctor then presented my husband with the first way to treat his condition.  Fortunately, aspirin therapy was acceptable in his case, and many people were doing it back then, as now, for heart health.  So he began an aspirin regimen.  In the Spring of 2003, after a distinguished career with the United States Air Force, my husband retired.

The Spot

We would not have to wait long.  During the summer of 1998, my in-laws came out for a visit.   We rode the Durango-Silverton steam train, saw Garden of the Gods, and Pikes Peak and toured one of the mines at Cripple Creek.  After getting home on the evening of our visit to the Royal Gorge bridge, my husband started complaining of numbness in his left foot.  We wondered if he had pinched a nerve while walking. 

He brought this new symptom to the attention of his doctor.  This time the doctor referred him to a neurologist at the United States Air Force Academy.  He began reviewing his records and decided that he had Tarsal Tunnel syndrome, which is the foot version of Carpal Tunnel syndrome, in which the tibial nerve becomes compressed as it travels through the tarsal tunnel in the foot.  It leads to tingling and numbness.  Since we had done a lot of walking in our sightseeing, it made perfect sense, so he was fitted with a shoe insert that would keep his foot at a certain position while he walked, thereby relieving the pressure on the nerve. 

After wearing the insert for several months, it became clear that it was not helping the numbness in his foot, so he once again saw the doctor.  This time he was sent to a PA Practitioner at the local Air Force base.  Several possibilities were discussed, including Multiple Sclerosis. 

As I look back on the early visits to all those doctors, it was as if I were watching a bizarre movie, where none of the  scenes made any sense….like some sort of medical puzzle.   As is typical of the military, we were always lucky if we could get in to see the same doctor, and it wasn’t unusual to have to change doctors because of reassignments, either by the doctor or the military member.    At any rate, it wasn’t unusual to spend part of the visit recounting your entire health history to a new doctor.  In my poor husband’s case, that history was becoming a bit long.  As the PA reviewed his recent health history, he decided to do an MRI.

Another aspect of the military is that you get used to anything…..when he told me that the MRI was at 11 pm, I didn’t bat an eye.   Of course I couldn’t go with him, since we had 2 small boys at home, and no one to come stay with them.  At the follow-up appointment to read the MRI, the PA showed him a spot…..on his brain.  His exact words were:  “Son, you’ve had a stroke”.  It was a Trans Ischemic Attack, or TIA.  The doctor began asking him if he had had any weird headaches, any unexplained symptoms of any kind.  We were scratching our heads, trying to think of anything…..anything at all.  The only odd occurrence that came to mind was on New Year’s Eve, 1993, when he had woken up in the middle of the night with a blinding headache.  He sat up in bed and yelled because it was so painful, and I thought I would have to take him to the ER because I was afraid it was an aneurism.  However, here we were in 1998, with the diagnosis of a stroke.  Would it have taken five years for the first symptom to occur?  Even more bizarre was the fact that a stroke had occurred in a 34 year old man.  No one could give us an explanation.  Once again, we were left shaking our heads and thinking, “well, that’s weird”.  Once again, we wandered, clueless, back into the demands of our busy little family.

The Letter

Our story begins with a simple blood test.   For all the impact it would eventually have on our family, there was no fanfare…..no banners or trumpets.  There was no moment of clarity, until it was much too late.  Just a blood test.   Unlike results which announce a happy event, such as the impending arrival of a baby, or total devastation as in a cancer diagnosis, the blood test submitted by my husband in the fall of 1997 would begin as the ultimate test of trust, and eventually challenge all that I knew about comfort, strength and self sacrifice. 

It had been a whirlwind couple of years:  My husband was a Sergeant in the United States Air Force, and, after spending a year away from me and our two small sons, we began a new chapter in a small community south of Colorado Springs, Colorado.  It had been an adventurous summer getting to know the area, and we loved the mild weather and beauty of the outdoors.  We had weathered the Blizzard of 1997, and were now settling in to the rush of the holidays, and all the fun and anticipation that brings to a family with young children. 

It was during this time that he wanted to kick his blood donations up a notch, and decided to donate plasma.  This screening process took more time, and had to be completed in advance.  With my blessing, he completed the questionnaire and submitted a blood sample.

Since so many years have passed, it is hard to remember the exact wording of the form letter we received a few weeks later.  However, the word “syphilis” jumped out at me almost immediately, and flooded my heart with a numbing mix of anger, suspicion and hurt.  When he got home from work, we read the letter over and over.  It made no sense.  The implications were devastating, and it seemed that there would be no logical explanation.  Each of us, knowing our own innocence, blamed the other.  I wondered if we could ever repair the damage.  We thought of our recent past:  we had just spent the last year apart, he in a place that was legendary for breaking up marriages.  I had been the sole parent of a 5 year old and a newborn.  The math did not add up in his favor.

Ultimately the decision was made to see a doctor.  My bloodwork came back normal (was there any doubt?).  His came back negative for syphilis (I had no doubts, really I didn’t).  However, there were several markers in the results that prompted further testing.  One of the markers that would give a positive syphilis result was testing as abnormal.  The doctor ordered more bloodwork.  At that point we were just puzzled, but not concerned.  For reasons that were unclear to us, he was referred to a neurologist.  During the course of a series of visits, and many, many tests, we began to think that doctors would never figure out what we were dealing with.  

 When you are on the cusp of something so rare and unpredictable, you don’t start to worry right away.  I mean, how bad could it be?  You try to relate it to medical things you know about.  And then you wait.  In our case, with two young boys to raise, we had no choice but to jump back into family life with all we had, and wait to see what happened next.