A Clear Plan

At this moment, we are in maintenance mode.  With everything that has happened, the blessing is that we have learned hard lessons with scary, but so far non-catastrophic results.  My husband and I made the difficult decision in late Spring that he needed to go on disability.   It was taking every ounce of strength and energy that he had in order to get through the day and he would not be able to keep doing all he was doing and still take care of himself.  When we notified each of his doctors, they  marveled that he had been able to keep up as long as he had.  This reaction solidified that we were doing the right thing.

As with everything he’s had to either give up or alter, he’s had to come to terms….usually fighting tooth and nail to keep his freedoms.  When his Pulmonologist said he needed oxygen therapy, he resisted.  When I suggested that he just ‘try it’ and see if he felt better during the day, he agreed, BUT “only for a few months”.  I quickly learned that my role is to gently push him towards what he needs to do, but in such a way that he is still calling the shots.

The Monday after his last day of work, we began working at finding the source of his cough.  During the Summer it had become progressively worse, sometimes to the point of him throwing up or passing out.  For two months, our days were filled with diagnostic tests and doctor’s appointments.  A CT scan revealed that his lungs were filled with spots, and he was promptly scheduled for a bronchoscopy.  His Pulmonologist went over the results with us, and thankfully, they were not tumors.  Since we had not met with him between the CT and bronchoscopy, we had no idea that he suspected tumors, so we were a bit surprised.  However, not knowing this meant that we were also not worried.  What he did suspect was that my husband had  Bronchiolitis obliterans with organizing pneumonia (BOOP).  It is a rare lung condition in which the small airways (bronchioles) and air exchange sac (alveoli) become inflamed with connective tissue. (from the American Lung Association.  http://www.lung.org/lung-disease/bronchiolitis-obliterans-organizing-pneumonia/)

Unfortunately, the recommended treatment with Prednisone caused him to be hungry all the time.  Compounding this was his fluid intake, which helped his cough some, but also caused swelling.  At some point, excessive fluid in his intestines rendered his Lasix ineffective.   In early November, he was hospitalized with acute congestive heart failure.  Ten or so days of fluid removal made all the difference for him, and he was released right before Thanksgiving.

And so, our clear plan is:  VERY low sodium intake, VERY careful fluid restriction.  He weighs daily, and every evening he flexes his toes for me.  As long as we can see the tendons in his feet, we feel we’re on the right track.  It feels good to be in control of what’s necessary in order to keep him as healthy as possible.  It has been a long journey to acceptance.  However, acceptance has also been the gateway to peace, and we have learned that by accepting, we are now open to seeing the blessings in each day, and being thankful for what he CAN do.

Now I Know

As I was cleaning up today after our wonderful Christmas dinner, I marveled at the change in perspective one gains through the years, and I realized that I finally understood one particular memory from days gone by:  that of my Grandmother, a gentle smile on her face, quietly contemplating all the activity (read:  chaos) of our family gatherings.  These were the later years of her Grandmothering, when she was blessed at the time with 6 great-grandsons, and due to ability and age, held court as the Matriarch while her daughters and granddaughters prepared the meal.  She contributed frequently to each conversation and dished out lots of advice, but mostly she observed, as if she were memorizing the details of each moment, her very own personal home movie that she could replay over and over all through the year.  Actually, it was more like she was SAVORING each moment as we would savor the delicious turkey and dressing or pecan pie.  These moments were her spiritual nourishment, the assurance that her family would thrive once she was gone from this earth.

This memory prompted me to really try to understand this transformation.  As children, we are filled with excitement at the prospect of gifts received and the fun and activity of the season.  When we become parents, we are focused on creating the magic and passing on the traditions.  When the traditions are passed and the pressures of early parenthood are eased a bit, we may then savor.  We have gained the wisdom of knowing that circumstances can change in the blink of an eye, and that a lot can happen in one year’s, or even one day’s time.  My Grandmother perhaps learned to savor way before her time:  when she was four, her father, a very healthy young man, perished in the Swine Flu epidemic in 1918.  As a young wife, she lost her first two children…one only a few days’ old, the other just over a month old.  Once she had her surviving children, I expect she savored the early-parenthood days in a way I never could, simply because of all she had lost.

And so now I know.  I know that today, in fact every day, is meant to be savored.  Our family dynamic will change this year.  Our oldest will start his post-college career, our youngest will graduate high school and join the Navy.  Our Christmases will never be the same.  In fact, they have never been that way, it’s just that I have learned to savor, to hang onto each moment.  As the saying goes, ‘Enjoy the little things in life….one day you will look back and realize they were the BIG things.’


This past weekend was a special one for our household.  Like many things that are worth the wait, it was a long time coming.  It was all the more special for what we’ve had to overcome as a family.  I won’t sugar-coat it:  many times I prayed this would be a milestone that we would all get to witness, and that gift was not lost on anyone.  Saturday, December 14, our oldest son graduated from college.

Something else I won’t sugarcoat is the fact that I almost missed it, not physically, but emotionally.  If it helps no one else, I want to be able to look back and remember the epiphany that changed my perspective on the Wednesday before the ceremony.  It had been a busy Fall for us…we went out of town nearly every weekend, which is very rare for us homebodies.  In addition to that, I have spent the better part of the last month working twice as much as usual, due to my job-share partner’s illness.  My husband’s hospitalization in the weeks leading to Thanksgiving was the final ingredient in my recipe for an overstressed wife, mother and caregiver.  I could see no end to the events, and my to-do list for the perfect graduation party was multiplying before my very eyes.   Part of this list was learning to complete two years’ worth of home repairs.  I don’t know why it was so important, I guess I wanted everyone to think I had it all under control.  That was far from the truth.

At any rate, I was trying to cram an entire day’s worth of yard work in the one hour between work and sunset, when it hit me:  OUR SON is GRADUATING.  From COLLEGE!!  We are not celebrating our clean yard, our Christmas decorations, or whether we got the ceiling patched.  We are celebrating the miracle of loved ones among us and the miracle of our children and their accomplishments.   In addition, every person who would be with us on that day knows the challenges we have faced.  Once I was able to let go of a little bit of pride, a heaviness was lifted and I could finally breathe again.   It was exhilarating to mentally cross the things off my list that didn’t really matter.

On our son’s special day what did matter were the things that, if I had allowed stress to direct my ways, I might have missed:  The look on my husband’s face as he watched our brand new college graduate march across the stage.  The love and appreciation for those who took an entire day out of their lives to be a part of our own.  The raw emotion of our younger son as he literally pounced on his brother for the most heartfelt bear hug I have ever seen.  The sounds of laughter and the recalling of memories that rang through my not-perfectly-clean-or-maintained-home.

It is very gratifying to see our son grow into the wonderful young man he is, even if he DID do it in the blink of an eye.   It was wonderful seeing him interact with his younger brother, with his grandparents, his aunts, uncles and friends.  It is wonderful to know that, whatever else we have done in this life, we will have left the best of ourselves in these two fine young men.  And THAT is worth celebrating!

Events from the year….

I would love to be able to say that the last year has been uneventful.  There have been many adjustments and little quirky things that have not been fully understood.  After the defibrillator was implanted, my husband’s platelet count dropped as it had after his stent procedure in 2011.  He had needed steroid treatment, and it was thought that being weaned off them too quickly had caused the platelet drop. It took months for his counts to become normal again.

There were plenty of heart-stopping moments, like the morning a couple of weeks after the surgery that I went in to wake him and he was covered in blood….after a thorough exam, we decided he must have popped a stitch, and thankfully the bleeding had stopped on it’s own.

The discovery of a sliding hiatal hernia and significant esophageal erosion prompted more testing and talk of surgery to repair it.  Of course, each time surgery is suggested for my husband it makes my blood run cold, and we carefully considered if the risk was worth the benefit.  Not only does he run the risk of hemorrhage because of the blood thinners, he runs the risk of developing a clot, which could then travel to his brain and cause a stroke, or to his heart or lungs.

In March of this year what we thought was a stomach virus turned out to be an inflamed gall bladder.  He had only vomited a few times, yet by the time we got to the ER, his heart rate was in the 140’s.  Over the next few hours it continued to climb, maxing out in the 170’s.  It took an entire day to get him stable enough for surgery.  Of course, this time the risk did outweigh the benefit, and they had to proceed.  The surgery was supposed to take about 45 minutes, including prep time.  When I was paged after only 20 minutes, I thought the worst.  However, we got the news that everything had gone smoothly, and we waited to see him in recovery.  This episode taught us that he shouldn’t vomit if it can be helped, and he was sent home with an anti-nausea medication.  And we waited for the next issue.

Practice Makes Perfect

When I say ‘practice makes perfect’, it does hold a bit of morbidity.  I tell myself that I was just thinking of worst-case scenarios….going over events in my mind and how I would react to them.  Telling myself that I was preparing for something that I would react instinctively to, a reaction that would keep me from freezing helplessly.  One cold December morning it would make all the difference.

In the early morning hours, 2:30a.m. to be exact, on December 1, 2012, I was awakened from a sound sleep by my husband falling over on me.  He sometimes sleeps upright so that he can breathe better, and it keeps him from coughing so much.  I thought he was sitting up and just tipped over onto me.  So I gently shook him, knowing that since he is such a light sleeper he would immediately sit up and apologize profusely.  Nothing.  So I shook him a little harder:  nothing.  The alarm bells started sounding in my brain and I immediately wiggled around, using my feet to push him off me so I could quickly roll off the bed and turn on the light.

The image is seared into my memory, destined to be there forever:   my sweet husband, lying pale and motionless, eyes closed, with an eerie stillness about him.  My eyes went immediately to his chest….there was no movement:  he was not breathing.  I jumped onto the bed, trying to figure out how to pull him to the floor without hurting him.  I knew trying to do CPR on the bed would be pointless, since it would provide no resistance when I needed to do hand compressions.  And this is where my ‘practice makes perfect’ mantra would begin:  I would have to try to resuscitate my sweetheart while calling 911.

Thankfully, the act of my trying to pull him onto the floor caused him to give a small gasp and open his eyes.  I began talking to him as if he were a baby:  this singsong was the only way I could communicate without crying, or perhaps it would disguise my crying, shaking voice.  I told the 911 dispatcher that he was responsive, and I would now go downstairs and unlock the front door for the emergency personnel.  As I talked to him, I got his medication card out of my bedside table…another of my worst-case scenario preparations.

Within minutes, a police officer was coming up the stairs.  Soon after, the room filled with paramedics, and they began asking me what happened, his medical history, IVs were inserted, they read off his medications, I showed them his MedicAlert bracelet indicating his blood disorder.  There was tons of activity swirling around, yet it all seemed to be in slow motion….I think it had everything to do with the calmness of the paramedics, their kindness as they talked to us both.  There are several hospitals in the area, so thankfully I also remembered that I needed to request that he be taken to the one where his doctors have privileges.

He had two more episodes of syncope in the ambulance on the way to the hospital…thankfully he did not stop breathing again.  In the emergency room, he had two more episodes:  this time he vomited with each episode.

I am not sure there was ever an explanation given as to why this occured, but the cardiologist on call that night speculated that he would need a defibrillator.  On Friday, December 7, 2012 that is exactly what happened.  Despite his history of complicated surgeries, everything went without incident, and he was discharged just a few days later.

With renewed hope and happiness, I threw myself into preparing for Christmas.  I had spent the last week watching people prepare their homes for this wondrous time of year, all the while wondering if we would have anything to celebrate.  Late one night I drove up the driveway, and things seemed different, although I couldn’t really put my finger on it.  As I backed down the drive the next morning, I noticed the wreaths on our front doors.  Our sweet friends next door had put them up, and put away our harvest decorations.  I sat at the road, crying and admiring our beautiful wreaths, with the knowledge that if I didn’t have the heart to do anything else, I would see the evidence of Christmas Spirit each day during this difficult time.  When all was said and done it truly became the best Christmas ever.