The Headache-Part One

The most terrifying crisis in our journey began on a day set aside for giving thanks.  Our youngest son had recently graduated from Navy boot camp and we were thrilled that he would have his training near our home, which meant he was able to spend Thanksgiving with us.  We looked forward to that day, followed by a fun family weekend at Seaside to kick off the Christmas season.  I was excited about spending time with my parents, brothers and their families during a weekend of Christmas shopping and activities, all while enjoying the atmosphere of the little beach town.

When my husband started complaining of a dull headache on Thanksgiving morning, I thought it was stress related.  He had just spent ten days in the hospital in New Orleans, where we had gone for a heart/lung transplant evaluation.  He had been admitted after doctors discovered fluid around his heart and had just been released the day before.  I was sure that once he had a chance to rest, he would feel better.  However, by Saturday he still had the headache.  I told him if it hadn’t gone away by Monday morning, we’d go to the doctor.

Early on the morning of November 30 I was startled awake by the weight of him collapsing onto me.  When he didn’t respond, I turned on the light and found my husband having a seizure.  Paramedics arrived quickly, and by the time my brother, my son and I arrived at the hospital, he was already undergoing a ct scan.  Then the devastating news:  there were three areas of bleeding in his brain.  I was fearful and broken-hearted for my son as he sat in the waiting room with my brother, unaware of the seriousness of the situation and that his dad could die.  Arrangements were made to have my husband airlifted to another hospital where they had a neurology department.  It was a shot in the dark, but I asked if he could be transported to the hospital near our home.  When I explained his complicated medical history, the doctor agreed to try.

Once we discovered the helicopter was grounded due to fog, they could only take my husband to the next largest hospital.  By then I was on the phone with one of his doctors, trying to keep him up to speed on the efforts being made to reverse the effects of the blood thinners my husband is on.  I was exhausted, terrified and praying that my efforts would eventually get him transported to our local hospital.

When we reached the second hospital, the neurologist came right in to speak to me, reminding me how serious things were.  I was eventually able to get the information needed for my husband’s doctor to speak to the neurologist.  After their consultation, for the third time that morning he was put into an ambulance for the final trip across state lines.  I felt we had won a big victory in giving my husband the best chance of survival by getting him back into the care of his regular doctors.  By mid afternoon he was in the Neuro ICU in the hospital we were so familiar with.

The next several days were very critical, as they had to be certain that the bleeding had slowed and would eventually stop.  It was an enormous relief when doctors determined that he wouldn’t need surgery for this.  I went through the motions of keeping family informed as I anxiously waited for the swelling in his brain to subside, giving him a bit of relief from the ever present headache.

There is no way to describe the sick feeling that lived in my soul in those days.  Every time my phone rang, the room would spin just a little.  Even times when I was right there with him could be terrifying, like the day my brother, sister in law and I had to be rushed out of the room when his blood pressure suddenly plummeted.

By day five I had started to feel a little more relaxed and more confident that my husband would survive when I received a call from the ICU…it was the nurse gently telling me to get there as quickly as I could.  When I walked in and saw two of his doctors, I knew it was very serious.  My husband was in acute respiratory distress.  His respirations were dangerously high and the only way to save his life was to put him on the ventilator.  Once we were told that he would not live through the night without this intervention, my husband agreed to it.

So with a heavy heart I said “see you later” to my husband and left the room, and for the third time in three years they put him on life support yet again.

 

Back on the Roller Coaster Again

This post marks the end of another hiatus.  There were many reasons for not having the words to bring clarity to our recent events, but the time seemed right to begin again.  And because a lot can happen in a years’ time, I will have to backtrack a little.  I do appreciate your patience as I briefly go back in time.

It is funny how certain things will remind you of something, whether happy or sad, and the way you are reminded is so strange or out of the norm that you just know it was meant to weasel its way back into your consciousness.  For instance, last week I received an email survey to evaluate our “recent” visit to UAB Hospital.  In actuality, our visit was over a year ago.  Then today a woman approached my husband in a store and while pointing to his oxygen tank, asked if he had ever gone to UAB to see if they could help him.  Two separate events, two reminders of a most difficult time.

We began 2016 with preparations to have my husband evaluated for a heart/lung transplant at University of Alabama Hospital at Birmingham (UAB).  We arrived with great hope and a little trepidation…our first ride on the transplant roller coaster hadn’t gone so well with Oschner in New Orleans because they don’t do multiple organ transplants.  However after this first disappointing experience, his supportive doctors were quick to regroup and request to have him evaluated at UAB.

So in January of 2016 we arrived at UAB with our suitcases, medications and two large Manila envelopes full of paperwork.  And lots of hope and prayers.  The next several days would be spent getting labs, an echo, ekg, pulmonary function tests and appointments with the cardiac and pulmonary transplant doctors.  At the end of our stay, we would know if he had a shot at transplant.  I knew that there would eventually be classes for both of us to attend, and psychological testing as well.  A lot of evaluation goes in to the solemn task of being caretaker of another person’s donated organs.  The implications are enormous:  weighing the cost of giving a 51 year old man a heart and lungs versus a much younger man with two children yet to raise…it really did come down to who would have more:  more potential of survival, more to give, essentially, more left to do in this life.  With my husband’s underlying blood disorder, things would be complicated and we knew it.

After all the testing and all the consultations, we were told that he was not a viable candidate.  As one of his doctors stated, if the surgery itself didn’t kill him, the recovery would.  It’s one thing to know something in your mind, but to hear the words still sends a shock to the system.  Through our tears, we gathered paperwork and medicine bottles and quickly left, with that familiar sick feeling in the pit of our stomachs.  The knowledge that all the mental anguish and time invested, all the exhaustion and all our strength had made no difference was very discouraging.

But we had one last encounter to make and it would be the most bittersweet.  The final punctuation in an emotional chapter in our Book of Days.  On that last trip to the car with our luggage we were met in the elevator by a lung transplant recipient who gleefully showed us his surgical scars, without our even having to ask.  Rightfully so, transplant recipients are very proud to show their war wounds.  They have faced their mortality and are positively giddy at the chance to live again, and they don’t care who knows it.  I can imagine that would be our attitude as well, and it would have been charming if we hadn’t already been so devastated.  I’m guessing that Mr. Transplant was so thrilled at his second chance that maybe he assumed everyone would be willing participants in his joy.  And we were….we just had to swallow our own disappointment and tears in order to find the words to congratulate him and wish him well.  I’m sure it didn’t even occur to him that our presence there didn’t necessarily mean that we were to be members of his wonderful club.

On the long drive back home we discussed the pros and cons of trying again at another hospital.  Do we spend the good days chasing another chance at life, or do we spend those same days making the most of this life as we know it?

When his cardiologist first suggested transplant, I told my husband that I would state my feelings only once, and those feelings would not change, but that he needed to make his decision based on what feels right to him.  He didn’t need my input to cloud his judgement every single time.  He has not talked anymore about looking elsewhere.  I mention it from time to time, but it can only be his decision.  He knows that all he has to do is say the word and we will jump on that roller coaster once again.

Decision

Well, I had a post all ready to share and once again, life got in the way, so I decided to change topics.

Just one short year ago, my husband was hospitalized with Acute Congestive Heart Failure (CHF).   We knew something wasn’t quite right, as he was “weeping” out of the areas where he does his injections, and any place he had cuts, etc.  He was also having shortness of breath and was experiencing extreme swelling.  Needless to say, his Cardiologist was very concerned, thinking that his heart function had worsened.

So after several days of IV diuretics, he began to lose the water weight.  It had to be a delicate balance:  losing the fluids, but not too fast, which would also put a strain on his heart.

Once it seemed that he would rebound somewhat from this episode of CHF, his cardiologist began to discuss the possibility of another stent.  He felt that widening the artery in question would enable his heart to pump more efficiently, lessening the odds of another hospital stay.  Needless to say, we were very reluctant to do this:  it was a stent procedure back in 2011 that caused the clot in his heart, leading to the reduced heart function.  On a cold November Thursday the Cardiologist decided the procedure would take place the following Tuesday.

What followed was a wretched, wretched series of days.  We turned over and over the risks.  Any procedure is life threatening for my husband.  We knew that he could very well die on Tuesday.  It was a low, low feeling.

We began to have heart to heart conversations, sometimes out of the blue.  One evening we were watching tv and my husband said, “you have to get re-married”.  I say, “what in the world are you talking about?”.  “You know,” he says “after this”.  This is something I am not even prepared to talk about, but, as I found out in later months, it is something he needs to hear.  He needs to know that I’ll be okay.

My heart was heavy all weekend, thinking of the grandchildren he might not get to see, the family events missed.  It was more than I could bear that we were agreeing to something that might end his life.   My stomach was perpetually in knots:  it seemed the ticking of the clock was bringing us closer to our personal doomsday. 

The turning point was the day that we realized we could, in fact, say no to this procedure.  We didn’t have to be along for the ride when we felt sure we might crash.  Not this time.  We were both giddy with relief….not only was it empowering, it immediately brought a sense of calm.  For the first time in forever, the sun shone a little brighter, the sky was a bit bluer. Hope put a new lightness on everything.

Fast forward to the present time:  after several suggestions by a couple of his doctors, we are on a fact-finding mission to decide if a heart-lung transplant is doable in his situation.  I have no doubt that we will have a few of those feelings that we experienced last year.  After all, it is a major undertaking.  My husband is very unsure…our sons and I are leaving it entirely up to him, feeling that something of this magnitude needs to be his decision alone.  Perhaps since we will have more time to get used to the idea, things will not be as hard as they were just one short year ago.  Again, time will tell.

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.

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.

 

Stroke

At first his words didn’t register….I didn’t understand as he tried to tell me how he could not move his left arm and his left leg.  He couldn’t flex his fingers, or bend his foot at the ankle.  We mentioned it to one of his doctors and, after yet another MRI it was determined that he had had another stroke.  It had likely occurred when a clot developed in his arm after a routine blood draw while he was on the respirator and traveled to his brain, resulting in the stroke.

He seemed so small and lost, sitting in that chair in his ICU ‘room’.  He was extremely quiet, and I knew what he must be thinking.  He had always worked, and took great pride in providing for his family.  I knew he was worried about how we would make it if he had to leave his job.  I immediately began telling him how we would be just fine, I’d work more hours, we’d cut corners…..I desperately needed him to be positive, and not become depressed.  He was adamant as he said, “You are NOT going to make me quit my job!!”  I told him I had no intention of doing that, I just wanted him to know that we would survive if it were necessary.

The first few meals I spoon fed him.  Then they brought him pork chops.  It was a cruel twist that he is also left-handed, so it was very painful to watch him maneuver the knife and fork with his only cooperative hand being the weaker one.  He was determined to learn, however.  After a few more days he was ready to go to a regular room.  As we waited for Transport to take him to his room, we received the news that his platelet counts had dropped to 25,000, from about 250,000, and doctors were concerned that it had something to do with his blood thinner.  Up to this point I had been stoic around my husband at all times.  With his condition being resistant to coumadin, there weren’t many other options in the way of blood thinners, and as I pondered the horrible consequences of him having NOTHING to thin his blood, I began to panic.

I don’t recall the treatment they used…likely it was Prednisone, but gradually his platelet count began to climb again.  He began receiving physical therapy on his arm, hand and leg, and slowly began taking walks.  He had gotten into a routine with the physical therapist where they would walk around the perimeter of the 3rd floor.  One Saturday SHE was the one keeping up with HIM, and she mentioned that he was getting so much faster.  “I have to” he told her, “it’s halftime!!”.  I knew then that he would be fine.

His at-home therapy included working on his fine-motor skills, since he needed to write and use tools, etc. for work.  He spent hours writing, and had this little machine that would provide resistance when pressed down by his individual fingers.  He was constantly exercising those fingers.  Before we knew it, he was making plans to go back to work, and for the next year, we settled into a new normal, as we dealt with the limited mobility and memory issues.  His lowered heart function also meant that he tired very easily.  When he came home from work every evening, he was exhausted.

The end of November, one year later, I would learn the value of ‘practice makes perfect’, and we would begin another chapter with yet another crisis.

 

Sedation and Gratitude

It is hard to describe the emotions:  Fear, most definitely.  Lost, absolutely.  The person whom I had relied upon for over half my life was not able to help me if the car broke down or if one of our sons got hurt.  Even when he was in Korea, we could at least keep in touch via e-mail.  For the first time ever, I would have to rely totally on myself for life’s little emergencies.

Once again, no matter what else was going on outside of the hospital, at 10:00, 2:00, 5:00 and 8:00, I was in the ICU.   For the first several nights he had two nurses caring for him.  It was gratifying to watch how they were so coordinated in what they did.  My oldest son, who always has a million questions, was true to form:  he asked if the blood transfusions that his dad received were already thinned….I had never given that a thought.  The nurses were always so patient with him as they answered every question.

It was during this time that I decided, in order to keep my sanity, I needed to search for gratitude.  I began each day with a grateful heart, being thankful that we had all made it to another day.  I learned how to keep up a positive front for our boys, telling them it would be all right…when inside I had no idea if it would be or not.  Over time, I began to believe it myself.  I was grateful for the random kindnesses of strangers…..the man who took the parking space that I was waiting for:  I had only 10 minutes to get to my husband’s bedside, and when he quickly moved into my space, the frantic look on my face as I honked furiously prompted him to back out and look for another space.  Anyone who gave a kind word or a smile was a recipient of my gratitude.  I then ended each day being grateful that we had all made it through.

There were difficult times:  when they had to let him off the sedative for a ‘sedation vacation’.  He would try to get the tube out of his throat by gagging, or trying to cough it up.  It was very difficult to watch.  Sometimes when I was alone in the middle of the night, it seemed like I was the only one whose life was falling to pieces.  It’s a very lonely feeling.

After what seemed like weeks (it was 5 days), he was finally weaned off the respirator.  I will never forget the look on his face as he came out of sedation.   He had gone in for a routine procedure and 6 days later wakes up, not realizing how hard he had fought, how hard the many dedicated doctors, nurses and staff worked for this day.  I could read his face as if he spoke the words, and I automatically said “the boys are fine…we are all fine”.  He nodded his head, and the relief showed in his face as he closed his eyes for a brief rest.

When I came to see him at the next visiting cycle, he was sitting up in the chair in his ‘room’.  I was amazed to see him up so soon.  As I walked over to give him a hug, he looked at me and said, “I can’t feel my left side”.

Stents and Complications

It was a huge relief to find that they would be able to put stents in the graft that hadn’t ‘taken’.   We had to wait a bit for my husband to get his strength back, and so, at a follow-up visit to his cardiologist almost two months later, it was decided that he would be put on the schedule for the procedure.  It just so happened that it could be done the next day, and so we agreed that sooner was better.

The procedure itself was routine.  Afterward, he was brought into a room on the cardiac floor to recover.  I noticed that his coloring wasn’t too good…he still had a grayness to his skin.  As he came out of the anesthesia, he began to complain of chest pains, and told me he was going to be sick.  I noticed how clammy his skin was, and his nail beds had begun to turn blue.  By this time, his cardiologist had been called, and the room suddenly filled with people. 

Thankfully, his cardiologist knew immediately what had happened…part of the artery had collapsed while he was putting in the stents, and when he inflated it, it had stayed open.  The artery must have closed again, and it would be simple to go in and stent that area.  So, they take my husband back to the cath lab, and again I wait, with my cousin by my side. 

It seemed to take forever, and indeed, it took much longer than it should have.   When one of my husband’s doctors came to talk to me, I discovered why.  When his cardiologist went in to stent the collapsed area, my husband developed a clot, which broke loose and went directly into his heart.  It damaged a great deal of his heart muscle, and it would be difficult to tell if he could regain some of his heart function.  He was in critical condition, and would need to stay on the respirator until the next day.

I felt so sick inside, and was struck with a blinding fear like I had never had before.  For the first time ever, I understood that my husband might die.  I sat there, wrapped in a blanket, and listened to life go on around me.  Somewhere in the depths of the hospital the Lullaby Song played, announcing that the world had yet another new member.  While MY world was teetering on collapse, others around me had the NERVE to laugh and be happy, have babies and continue their lives.  I could not think…I was comprehending nothing but the fact that my husband might not come home to me and our sons. 

It was the longest night I had ever lived, yet when I saw my husband the next morning, he did look better.  Once I was told that he would come off the respirator, I called his parents to let them know how he was doing.  I was in the waiting room with some family members not five minutes later when one of my husband’s doctors came in to talk to me.  His doctors felt that his heart was too weak for him to breathe on his own.  They decided that if he spent a few days on life support and let machines breathe for him, his heart would have the best chance to improve.  With my own heart heavy in my chest, I went back in to see him again, before he was given a sedative and sent back into sleep.

Medicinally Induced Shenanigans

About the 4th or 5th day post surgery, my husband started to come out of some of his heavier medications, and we were able to finally talk to each other.  Our first conversation went like this:

He:  “Why am I here?”

Me:  “You had a heart attack and they had to do a triple bypass”

He:  “A HEART attack?!?  Oh my….oh no!  OH NO!!  I am so stressed!!  I’m having chest pains!!  Oh NO!!!”

Very.      Long.        Pause…….

He:  “Now, why am I here?”

Over time his doctors began to be concerned that he couldn’t seem to absorb what had happened.  A certain amount of retention failure is normal due to the medications, but his seemed out of the ordinary.  He was taken in for an MRI, and a psychologist was called in to evaluate him.   Nothing was found, and eventually he began to improve.

During this time I discovered that the combination of pain medications, the residual anesthesia and general trauma of surgery would turn my normally agreeable husband into a belligerent Man-Toddler.  One night, in his delirium, he decided that he no longer needed his central line…and so he removed it.  Himself.  The combination of blood thinners and his layman’s removal technique had caused quite a stir in the ICU that night.

Like the mother of a toddler at preschool pick-up time, I was regularly met with stories of his misadventures of the night before.  He was not a willing participant in the use of the spirometer, and developed pneumonia as a result.  I felt horrible that I had not pushed him enough to use it, and now we had another hurdle to overcome because of that.

Despite all of the challenges, around the 7th or 8th day, he seemed strong enough for a regular room.  It was a proud moment for us, and we were giddy with excitement as we waited for someone from the Transport team to take him to the cardiac floor.

As he got settled into his new room, the nurse came in and took report from his ICU nurse.  It was during this time that he began having difficulty keeping his oxygen levels up, and I could see the fear in his eyes as he began to be in some distress.  Suddenly the room filled with people as they prepared to take him back to ICU.   They weren’t going to wait for Transport to take him…..he needed to go back…..immediately.  They began yanking tubes out of the wall and flew down the hall with my husband.

This episode bought him some time with a large oxygen mask that fit over his nose and mouth.  He did not like it, not one bit.  As long as he was calm, all was well.  If he got agitated, one quick swipe of his hand and he’d have that mask off faster than a Major League catcher.  His nurses were constantly watching him out of the corner of their eyes….when they saw that hand go up, they would say….”Mr. Purnell…..”  He would then smile sweetly…..and scratch the side of his face.

One day we had a showdown:  I had fought him all morning to keep that mask on.  He kept taking it off.  One of his nurses had come in to adjust his oxygen, just as my husband had thrown off the mask for the hundredth time.  The nurse held out his hand.  My husband gave him the mask.  The nurse put a nasal canula on him and left the room.   My 47 year old belligerent Man-Toddler husband looked me square in the eye and stuck his tongue out at me.

We graduated to a regular room a few days later, with no complication.  We were still dealing with some of the effects of the medicines and he would often test his boundaries, but each day got better.

Near the end of this hospital stay I got some news that would let me know that our journey was far from over:  tests showed one of the grafts hadn’t taken.