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.

 

Lessons from a Ginger-Lily

Walking into the back yard last Saturday morning, I noticed it immediately.  The contrast of the bright orange bloom to the green grass was so vivid that I had to see why such a glorious flower was growing in the middle of the yard, several feet from the flower garden.  As I got closer and could see the long green stalk, it began to make sense:  one of my tall, beautiful Ginger lilies had toppled over.  However, about eight inches of the very top was bent at a 90 degree angle from the ground, as if the bloom, by sheer force of will, was trying to pull the plant upright again.  It’s predicament tugged at my heartstrings….it was as if this beautiful plant were telling me that, despite the apparent doom of the situation, it was alive and well, and holding up its bright orange flag in victory.

I took several pictures of my poor, persistent little friend, and began weeding my neglected flower garden.  It wasn’t long before I got to the area where my ginger lilies were planted, and discovered the lesson I was meant to learn.   It hadn’t been very long since I had worked in the garden, yet the weeds were horrible….and not just weeds, but the bamboo that I had literally been trying to kill for years was trying to choke the life out of my beautiful lilies.   I became struck by the fact that, despite all the obstacles that my flowers were facing, they continued to grow strong and tall.  It suddenly became clear to me that this is a metaphor for our lives.  I thought of the many obstacles we have faced over the years:  things that would have hampered our growth as individuals and as a couple, and realized that we have managed to stand tall.

Apparently my lesson was not over, because, in my haste to put everything into the wheelbarrow, I broke the stem where it had bent at its victorious 90 degree angle.   I looked at it and felt so helpless…my poor lily was trying to be so strong, yet I had broken it.   I began to think about my husband, and how this had to be a metaphor for how he must feel at times.  Watching me in times of my own weakness, and knowing that his illness is the source of so much stress, must have him feeling utterly helpless.   I hurt for him in that moment, and began to search for meaning…if I can remember this feeling when I’M feeling down, maybe I can change how I act during those times.

As I post this, there has been no epiphany.  I do, however, have two pictures:  one of my beautiful fallen lily, and the other of the beloved bloom perched in a beautiful bud vase.  For now, they will be my reminder of all we have stood for and lived through, and the commitment I have made to be gentle to his soul.