February 20th, 2015 began like several other of the previous eleven days had; Sam lying still in the bed while the monitors monitored, the pumps pumped, and the watchers-Keri and I-watched at the sides and foot of the bed, looking back and forth between all the aforementioned instruments, and each other.  His condition had been improving gradually over the last few days.  What we called improvement was the doctors and RT’s slowly reducing the settings on the oscillator, thus reducing ever so slightly Sam’s dependency on its life-sustaining effects.  While he had indeed been gradually improving, what we had no understanding of, was that this improvement was like pouring a shot glass of water into a swimming pool and saying it was filling up.  We simply did not have a complete grasp of how grave his situation was, and exactly how dependent he really was on that machine.  I would gain that perspective this afternoon.

I had spent ten of the last eleven nights in that San Francisco hospital either at the side of Sam’s bed or down the hall in an unused room the hospital graciously allowed us to use during Sam’s stay.  I had gone home one night to resupply after Keri arrived on the 11th, leaving the hospital late in the evening and racing back down at dawn the next morning.

The first five or six nights were bad.  For some reason, nearly every one of those nights between 10:00 PM and about 2:00 AM, Sam plummeted.  The all-important number on the monitor screen was the “O2 sat”, or oxygen saturation level-the level of oxygen that was saturating into his blood as he breathed, or as the machine breathed for him, as was his case.  A perfect O2 sat is 100%. 90-95% is acceptable.  Below that and attention is required.  During what I would come to call “the ugly hours” of 10:00 PM and 2:00 AM, Sam’s O2 always dropped.  Sometimes down into the 80’s, meaning for whatever reason, he was declining and measures had to be taken.  These were very, very frightening times, to say the least.  We would cuddle up to him and talk to him, pray for him, kiss him and tried to let him hear our voices.  Generally by mid to late morning he would be on the upswing again.

There were times throughout these first five days when he declined to such alarming levels that we were nearly certain we were only moments from losing him.  To say these times were gut wrenching doesn’t even come close to capturing the moment.  Several times during these five days, I got right up close to Sam and nuzzled him with my nose, my tears falling on his beautiful face and in his beautiful curly hair.  I told him if he wanted to come home with me, I would love that.  But if he wanted to go home with Jesus, I was okay with that too.  I then had to say those same words to the Lord.  It was the Garden of Gethsemane and Mount Moriah at the same time.

Jesus, when facing His own death, had to reach the place of saying “not my will, but thine be done”.  My will was for Sam to recover and to bring him home.  I wasn’t sure what God’s will was.

On Mount Moriah, Abraham was to offer his only son Isaac as a sacrifice to the Lord.  He walked up the mountain with him, but was prepared to walk back down alone.

On one of those occasions when I was right up close to Sam, kissing his nose and cheeks and forehead, and quietly talking to him through my gentle sobs, my wife said a group of doctors, nurses and other medical personnel had gathered outside the room watching.  I don’t know why this was so significant to me, but it was.  It was a very intimate and private moment, but I was glad it was noticed by others.  I was glad someone saw how much this precious little boy meant to me.  I have always wanted other people to see the value in Sam that I saw and if they couldn’t see it for themselves, then maybe they could see it in how much I loved him.

During those first five or so days, life was the most terrifying roller coaster ride I had ever been on.  In the times when Sammy would plummet, Keri and I would plummet with him, only ours was and emotional one.  In the moment when you believe your child may die, there is no lower hell into which a parent can descend.  It is like being on the bottom of the ocean in the Peruvian Trench where the temperature is barely above freezing, the pressure is thousands of pounds per square inch, with a near total absence of sunlight.  It is the coldest, darkest, most crushing place on the planet.  An environment so hostile, that human life is not possible without specialized equipment.  This is similar to what it feels like to watch your child die.

But then Sam would turn the corner.  His numbers would begin to improve.  And doctors and nurses would dare to smile.  And we felt hope.  From the bottom of the sea to the top of a mountain.  Dizzying sometimes, nauseating at others.  Emotionally exhausting.  And this happened a dozen times that first week.

The tallest mountain range in the world is not the Himalayas.  It is the Andes.  The Andes Mountains originate deep in the Pacific Ocean off the west coast of South America, down in the aforementioned Peruvian trench. 26,000 feet below the surface of the ocean.  They rise from those depths, breaking the surface of the ocean and soar to their heights of over 22,000 feet, for a combined 48,000 foot elevation, base to crest.  Imagine making that journey in the space of a few hours.  Several times a week.

After a few of these cycles, we began to recognize the toll it was taking on us.  Being wrung out emotionally, pulled this way, then that way.  Despair and then hope.  Crushing sadness, followed by exhilarating relief.  A nurse told my wife that some parents who went through these repeated cycles like we were, went home with PTSD.

The logical mind tells you to get off the ride.  Get out of the car and stand on the viewing platform and watch it from a bit of a distance.  Don’t let the upswings pull you up and downturns take you down.  It’s not healthy.  It’s not a ride a rational person would choose to stay on.  Realize that riding this ride all the way to the top, only to go screaming back to the bottom, and doing it repeatedly, is not something a sane person would do.

But you can’t get off.  You can’t detach yourself enough to not ride the ride.  The love and the bond with your child simply does not let you off.  So you allow yourself to climb to the heights as the ride takes you up, to the heights of hope, the heights of believing your little boy may live.  And when you crest the top and the descent begins, and you feel your stomach trying to force its way into your throat, and the ride goes hurtling what seems nearly vertically down at the speed of sound till you hit the bottom and it feels like your spine with be driven through the floor.

And you can’t get off.  You know you should but you can’t.  Because the entirety of your life is compressed into every moment as you live by The Monitor.  The whole of the universe is compacted into the single square foot of screen that displays your child’s “vital signs”-a term you never even knew the meaning of until now.  Nuclear war could break out overseas or even on your own shores, but if that information isn’t displayed on The Monitor, you don’t know or care.  All that matters is what that screen says.  Blood Pressure, O2, blood gas, heart rate, and temp.  Every fluctuation grabs and holds your attention.  You watch it until you see it even when you look away.  You see The Monitor in your sleep.  You see it when you look out the window.  You think you need some kind of screen saver for your mind, lest those details be permanently etched into it and like a computer screen with a static display that has been burned into it; even though another image is superimposed over it, remnants of that “vitals” display are still visible in everything you see.

One thing Keri and I were able to mitigate were the sometimes wild swings in the readings on The Monitor.  The oscillator vibrated Sam quite a bit, which was part of its job.  This vibration occasionally threw off the readings in blood pressure and O2, and sometimes the readings would basically spike or flatline.  We knew this could happen and were generally quickly able to discern the difference between a misreading and a genuine problem.  It happened frequently enough that while it always got our attention and made our breath catch, we could “read” the situation and not get too excited.

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The lowest point of that first week came late on the night of the 13th.  Sam had been struggling all day and around 8 or 9:00 PM, his lungs ruptured.  They simply could not endure the extraordinary pressure from the ventilator and gave out.  Air quickly began to escape his lungs and migrate out of his chest cavity up through his neck and into his face, and down into his abdomen and his groin.  This was immediately noticeable in that the air went into his eye sockets and made his eyelids look like they were stretched over golf balls that were trying to escape.  His abdomen swelled to nearly half again of its normal size, and the air worked its way into his scrotum and swelled it literally to the size of a baseball.  He looked like he had doubled in weight.

It was grotesque to say the least, but more than that, it was heartbreaking.  Heartbreaking to see such a beautiful and precious little boy in a condition that had he been conscious, would have been excruciatingly painful.  Though Sam was sedated, Keri and were unfortunately not, and it tore us apart to see him like this.

It was this night, just after his lungs ruptured-the very lowest point yet-that Keri and I went into a private room and wept and prayed and discussed a DNR directive.  DNR means Do Not Resuscitate, meaning that if his heart (which to this point was holding up) were to give out, we wanted to recognize and respect the body’s final stages of the shutting down process, and not intervene with yet more traumatic measures such as the defibrillator to try and keep the heart going.  His lungs were totally compromised and his liver and kidneys were also being compromised with the inundation of massive doses of sedatives, pain meds and paralytics.  If his heart began to falter, it would have bordered on selfish and cruel to put him through the defib process in an effort to prevent his body from doing what it was trying to do.

Issuing a DNR directive is truly the closest you can get to the Mount Moriah experience.  And while the Bible records little in the way of the emotions of the players, I imagine that Abraham agonized over the decision to slay his son.  All the way up the mountain.  An agony unlike any other. Yes, he had faith.  I do too, but it didn’t make this any easier.

Later that evening, the doctor punctured the left side of Sam’s chest and installed a tube to vent some of the air escaping his perforated lungs.  It did little right away to vent the air gathering in his eyes, cheeks, neck, stomach and groin, but it seemed to at least stop the swelling.

We prayed in that room that night that if Samuel was not going to leave the hospital alive, that God would take him from us then.  That night preferably, or even better, in a couple of hours on the 14th.  We felt that Valentine’s Day would have been a fitting anniversary since he was such a little love to us.  We asked for God to be merciful to us and to Sam and if we were going to lose him, to not let it be after a long stay.  Since it can take a month or even two or three to wean someone off a ventilator, we could think of little worse than to spend six or seven weeks living what we had the past five days, only to lose him anyway.  We asked God to let him get better, or go that night.

But he survived the night.  And the next, and the next.  And then he began to improve.  The vent in his chest slowly vented the air, and gradually the swelling went down.  His O2 levels slowly improved also and they began to wean the ventilator settings, decreasing the oxygen infusion, and the pressure of the ventilator.  It seemed like real progress was being made and in light of our prayer on the eve of Valentine’s Day, we were hopeful that Sam would recover and though it would be a while yet, that he would come home.

As the ventilator settings were weaned down and things began to look a little better every day, the other concern was that of infection.  He currently had aspiration pneumonia and RSV, which is a bad enough combination, but he was holding his own and fighting through it.  With numerous new points of entry such as the vent hole in his chest, the IV manifold port in his groin, the IV in each wrist, along with all the rest of the holes we all have, Sam was very vulnerable to infection.  And there are numerous superbugs that live in hospitals; bugs that have become resistant to antibiotics and in spite of all of the hygiene efforts, thrive and move around quite efficiently in hospitals.  Sam was in such a “desperate condition” as one doctor noted, and even though he was holding steady and improving a little, exposure to one of these resident viruses would prove fatal.

It was with all this in mind that we watched his temperature, which was constantly displayed on The Monitor that stood sentry above and to the right of Sam’s bed.  An elevated temp would be an indicator of a new infection-one Sam could not afford to have.

Toward the middle of the second week, Keri was needing to go back home for a day or so to resupply and take care of a few things.  We both wrestled with how necessary this was, and when it should be done.  We put it off as long as we dared, but decided Friday the 20th would be the best time for her to make a dash home and come back the next morning.  My dad graciously volunteered to come down Friday morning and pick her up.  She would then catch a ride back down on Saturday with a friend.  My dad was due to arrive around 10:00 AM, Friday, February 20th, and as this time drew closer, Keri was dreading leaving.  In fact, she would have backed out altogether had my dad not already been en route.  She didn’t feel right about leaving Sam.

His swelling had gone completely down and he looked great, his O2-the all important number-was looking fine, but he had a slightly elevated temp.  This was not unusual since he already had pneumonia and RSV, but his temp began climbing a little more than what had become usual on Friday morning and this had Keri worried.  She really didn’t want to leave.  But I reminded her that after we made the decision on the DNR the week prior, and prayed for God to take him then if He was going to, Sam had been steadily improving.  I told her Sam was fine and encouraged her to go.  My dad showed up a little after 10:00 and they left.

Shortly after they left, the nurse and an RT came into to reposition Sam.  This had to be done at least once a day to prevent bedsores.  Sam always reacted negatively to being repositioned.  Without fail, every time they repositioned him, his O2 dropped, sometimes dramatically.  But also without fail, he rebounded.  Except today.  He was repositioned around 11:30 AM, and by about 2:00 PM, his O2 was still in the 80’s and he was not bouncing back like usual.  His temp was still elevated-around 102, and not dropping.  Doctor Tsukahara (the T is silent) was looking increasingly concerned.

What also seemed different was that since Sam’s last repositioning a few hours earlier, the oscillator didn’t seem to be producing the usual vibrating motion it was intended to, and had been for the last ten days.  It was discussed between the doctor and the RT on staff that maybe there was a problem with the machine.  At about 3:00 PM, doctor Tsukahara, two RT’s, and at least two nurses gathered in Sam’s room to make some major adjustments, and possibly change out the oscillator.  On several occasions, while making such changes, an RT had to “bag” Sam with a manual respirator bag and do the job of the ventilator and breathe for him. Sam’s life, and breath, are literally in the hands of that RT.

A kindly young RT named Jeff who began to bag Sam, while another RT, Tony, was making adjustments to the oscillator.  Since there were so many people in the room, and they were discussing changing out the oscillator, at about 3:15, I stepped just outside the room and watched from immediately outside through the floor to ceiling windows. As soon as they took Sam off the oscillator and Jeff began to manually breathe for him, Sam’s O2 began to drop further.  The oscillator had barely been keeping up, and Jeff simply wasn’t able to manually do what the oscillator was doing.  They put him back on the oscillator and turned the setting back up.  The oxygen infusion and the air pressure were all increased.  It didn’t help.  Sam didn’t respond.

I was standing just outside the room, watching what was becoming an increased flurry of activity, and watching The Monitor, watching the numbers continue to drop.  His O2 was dropping, and so was his blood pressure and heart rate.  I was not able to clearly interpret everything I was seeing.  Maybe I did but was in denial.  I do remember noticing that in the space of only a few minutes, Sam had gone from no swelling as he had been for a few days, to his eyelids bulging as much as they had at their worst.  I didn’t understand this at the time, but the reason for this was the plummeting numbers I saw on the monitor screen were accurate.  He was dying. They maxed out the oxygen infusion and the pressure of the oscillator, rerupturing his lungs and rapidly filling his body back up with air. And it didn’t help.  I was watching Sam’s life ebb away and didn’t know it.

One of the nurses, Terese, was standing outside the room a few feet away from me watching what was happening.  When it began to dawn on me that this situation might be serious, I looked over at her and asked “are those numbers accurate?”  She looked at me with an extremely uncomfortable look on her face and said something like “ummm”, and looked and turned away, as if to busy herself elsewhere, while not really trying to leave, but avoiding me and my question.  Poor gal.  Her discomfort told me there was indeed a real problem. It was just a few moments later that I noticed three things simultaneously; doctor Tsukahara turning around and walking away from Sam, while shaking head, and taking off his gloves.  Doing any one of those made no sense.  But all three made perfect sense.  His work was done.  Then his eyes met mine.  And I knew.  Sam was gone.  The Monitor by his bed registered no heartbeat, and it was telling me the truth. My precious little boy was gone.

As the full force of this reality settled down on my shoulders, they began to heave and through uncontrolled racking sobs, all I could do right there in the hallway was bury my face in my hands and cry “no, no, no, no, no”.

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If you have ever spent eleven consecutive twenty-four hour days staring intently at a one square foot screen, eyes flicking from one set of numerals to the next, and watched as those numbers simultaneously, in the space of a few minutes all declined;

Oxygen: Zero
Blood Pressure: Zero
Heart Rate: Zero
Pulse: Zero

Until they all say Zero;

The temperature is the last to still register as it begins to drop one degree at a time, until mercifully they remove the lead so you don’t have to watch in digital clarity as the child who brought so much warmth to your life goes cold.

You will never, ever be able to look at a monitor screen in a hospital room without going back there.  Back to when The Monitor declared to you in icy, clinical terms; “your little boy is dead”.

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After the nurses and RT’s left the room, I approached what a few moments before was my son.  The room was now quiet.  No background noise from the pumps and machines.  The oscillator was quiet.  And no movement from Samuel.  I would say he looked peaceful, but with the bulging eyelids and swollen neck and face, he looked anything but.  His tongue was slightly protruding from his mouth and he looked 20 pounds heavier.  This wasn’t my Sam-Sam.  He was already gone; gone before I could come back in to say goodbye.

I began to pull off the electrodes and leads so I could get closer to him.  I didn’t know if I was supposed to do this or not, but I wanted everything out of the way.  I began to kiss him and tell him how much I loved him and how much I would miss him and how I couldn’t wait to see him again.  A nurse asked if she could help take off the EEG electrodes and I agreed since they were attached with some kind of goo that had to be scrubbed off with warm water.  She was so gentle with him.

I slipped out of the room to go call Keri.  She had been home less than three hours and hadn’t hardly started doing what she went home to do.  I figured Lexi would be bringing her down so I called her first to give her time to get things situated.  I wanted to try to keep it together while telling her Sam had died, but I told her while sobbing.  I then called Keri. When she answered, I said “you need to come back down.  But you don’t have to hurry.”  It was the best I could do.  Then I broke down again.  And she knew.

It would take Keri at least three hours to get back down to the hospital.  It may sound strange, but I did not want her last touch of Sammy to be with him cold.  So I crawled up in bed with him when the nurses were finished and held him tightly as close as I could to me for the next three hours to try and keep him warm.  I let my breath fall on his face to keep it warm and I talked to him and prayed for those three hours.  I wanted so badly for my wife, who had been a supremely diligent caregiver to Sam, who had seen to it that his every physical need was met far beyond the basic need, to still have one last touch, one last nuzzle, while he was warm.  It was the longest three hours-trying to keep him at my body temperature while his body was trying to achieve room temperature, but since it was the last three hours I would ever hold him, they passed too quickly.  She was there before I knew it.

I don’t know if I succeeded in keeping him warm for her.

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Almost a year later as I typed and proofread this, I could scarcely get through one paragraph without weeping.  The pain is as fresh as it was at 3:30 PM on that day.  It is a pain the likes of which I never imagined was even possible.  It is the deepest, darkest misery I have ever known.  A soul crushing agony matched only in magnitude by my love for my little boy, Samuel Eli.

If Keri and I are a little out of sorts this month, or a little absent whether emotionally or bodily, please cut us a little slack.  As we relive the calendar month of February, and each event of each day comes back in living color.  The day Ashley got sick.  The day Sam got sick.  The day we debated taking him to the doctor.  The day we did take him.  The night of the helicopter ride.  The first time I thought I may lose him.  The second.  And the third.  The night his lungs ruptured.

To the night we said good bye and left the hospital for the last time, without him.

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Ever hear a mother recount the minute-milestones of the day a child was born on that child’s subsequent birthdays?  Looking at the clock, she says “It was about now I went into labor”.  “We left for the hospital a few minutes ago”.  “My water broke about now”.  “He was born right now”.

Yeah, you do that with the day your child dies too.

And the following week.

“Today was when the Neptune Society picked up his body from the morgue”.

“We bough a cemetery plot today”.

“Today was when he was cremated”.

“Today was when we picked him up, in a little blue box, and brought him back home”.

And so on.

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Could the medical professionals somehow be blamed for Sam’s death?  Hardly.  He was always in The Lord’s hands.  Every moment, every hour.  Every move they made was overseen by His ever watchful eye or directed by His sovereign hand.  If we were to sue for something, the first defendant to be named would have to be The Lord Jesus Christ.

To cast any blame on the staff would be to first cast it on Him.  And to say He is not Almighty.

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In times like these, I reach for my wife, and for The Lord.  Each fills a particular need.  My wife gives me the human touch, the understanding, and the fellowship that none of us could survive without.  The Lord gives me strength, peace, and comfort. His Light is so much more brilliant in the dark times.  His Word, so much more precious and meaningful.

I have drawn much, much closer to both in this past year.  Both are more dear to me.  I am a blessed man.

Romans 12 says to weep with them that weep.  And you never forget those who do.  It’s not rocket science; as social creatures, we humans have an inherent need to share our emotions.  To be heard.  To be understood.  It validates us, it strengthens us, and it relieves us.  And when someone sits beside you and reaches out and takes your grief in their own hands, and allows their tears to mingle with yours, the terrible burden is lightened just a bit.  The “grief spiral” is halted temporarily.  And that relationship is henceforth strengthened.  You never, ever forget those who do this, in these times.  Don’t assume we “need our space”.  That’s the last thing we need.  To be left alone with an ocean-full grief and that awful grief spiral, which gains momentum when left uninterrupted.  Those that wept with us are now knit together with us.

And always, always, The Lord was always there.

Psalm 34:18 The LORD is nigh unto them that are of a broken heart;

He is Always faithful.

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It is the working through the grief process that has caused me to search deeply in the Word of God for strength and also for understanding.  I know Him more intimately now and have more hope and more understanding than ever.

But it came at a cost.

When you sincerely ask God to make you what He wants you to be, brace yourself.  And consider that it may come at great expense.  When you say “Lord, I want you to use me”, it may take you places you’d rather not go.  Not of your own free will anyway.

Were He to tell you the price in advance, you might begin the bargaining process.

“Lord, I want to walk in heavenly places”.

“(This)________is what it will cost you”.

“Well…what will it cost me to just walk on the mountaintops then?”

The good, acceptable, and perfect will of God are not three degrees of His will.  “… (T)hat ye may prove what is that good, and acceptable, and perfect, will of God.” (Romans 12:2).  His will is at the same time altogether good, acceptable, and perfect.  He does not have one plan for you that is perfect, and then another that is is merely good, but less than perfect.  He doesn’t offer us Plan A, Plan B, and Plan C.  He has One Plan, and it is all at once good, acceptable and perfect.  We take it, or we leave it.  And both choices have costs.

A better way to read that verse is “That you may prove the will of God, which is good, acceptable, and perfect”.

Good, acceptable, and perfect.  But not necessarily comfortable.  Or convenient.  Or what I had in mind.

The process of becoming is rarely pleasing.  Not to us anyway.  But we cannot become without the process of becoming.  No one was ever made better by winning the lottery.  Men and women of God are built in times of suffering.  Period.  There is no shortcut, there are no exceptions.  Show me someone who has never truly suffered and I’ll show you a lump of ore on the front side of the refiner’s fire.

Waiting.

Waiting to become.

Jacob had an experience that changed his name, his nature and his life.  But he walked with a limp from that day forward until he died.  Some experiences mark you for life.  I wonder how many of his brethren wondered when he would “get over it”.  Some things change you in ways so profound and so permanent, and we may not always like it.

But suffering deepens one’s perspective.  It broadens our scope.  It makes us stronger.  It is how we achieve heights and depths the comfortable will never see.  I may walk with this limp for the rest of my life, but I will bear it gladly, for it marks the occasion when my nature and my perspective were forever altered.

Embrace suffering, for in it, you become more Christ-like.

Philippians 3:10 That I may know him, and the power of his resurrection, and the fellowship of his sufferings, being made conformable unto his death;

There is a knowledge of Him, and a power; the power of His resurrection, that is only realized when coupled with the fellowship of His sufferings.

Romans 8:16-17 16 The Spirit itself beareth witness with our spirit, that we are the children of God: 17 And if children, then heirs; heirs of God, and joint-heirs with Christ; if so be that we suffer with him, that we may be also glorified together.

Lord, take me there. Take me to that place.

Though our outward man perish, yet the inward man is renewed day by day. For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory;
(II Cor 4:16-17)

Amen