Severely Diminished

Standard

Pediatric Echocardiogram Report:   Name: Allistaire Kieron Anderson

Summary:

1.  Severely diminished left ventricular systolic function

2.  The left ventricle is moderate to severely dilated

3.  Ejection fraction (apical biplane) = 11%

4.  The left ventricular fractional shorting is 8%

5.  Mild to moderate mitral valve insufficiency

6.  Markedly abnormal left ventricular diastolic function

7.  Dampened systolic amplitude due to poor cardiac output

8.  Moderately dilated right ventricle

9.  Severely diminished right ventricular systolic function

10.  Estimated pulmonary artery diastolic pressure is 16mmHg above the right atrial pressure, based on a pulmonary insufficiency jet velocity of 2.00 m/s

11.  The peak tricuspid regurgitation velocity is 2.9 m/s=34mmHg

It goes on for three more pages giving the details that build the summary above.  I didn’t cry immediately.  My face stood still as I scanned and scanned the words, horrified at how many aspects of her heart are “severely diminished,” or “markedly abnormal.”  Somehow I made my way to the quiet room before I began gasping for air, eyes wide, eyes gripped closed and mouth wide with silent ragged terror.  What do they call it?  A flat spin, when a plane begins this awful downward spin from which there is no return?  It seems we are caught in this strong silent force, pulling her downward, down at frightening speeds.  I see the world whirling, whirling, images blurring, tears streaming and all the while mouth screaming in silence.  I can’t hear it.  I hear nothing.  I watch from outside and am trapped with her inside this gravitational horror from which it seems no effort can overcome.

The cardiologist says she does not know, she cannot predict if Allistaire will be able to recover from this heart failure.  If she does, it will take months.  The primary question is whether or not we have the time for her heart to heal.  A question no one can answer.  A question that feels futile because I don’t see how it will impact what we’re doing here.  We don’t really know the status of her disease because her heart is not in a condition to sustain sedation for the procedures necessary to get the answers.  Fortunately, her ANC, which hangs around 200, is not so recovered that it is necessary right now, or even advantageous to pursue the answers.  But she will of course need more chemo.  It seems abundantly clear that if she can ever recover enough function, it will take a long time, longer than the leukemia will sit obediently back and wait for.

On Wednesday afternoon, we will have a Care Conference meeting with Dr. Gardner, her oncologist, one of the cardiologists, and one of the ICU attending doctors.  Ashlei our social worker will be there hopefully and last night through tears and few words, I called Sten to come, come to Seattle.  Sit with me Sten and bear the brunt of these words that pummel and burn.  Dr. Gardner will lay out the chemo options.  I know there are several that are not considered hard on her heart that have been effective in the past, whether or not she can endure them at this low functioning or not, I do not know.  I do not know.  Dr. Kemna, the cardiologist I met with yesterday, said we need to discuss now our plan, our desires, should some more extreme intervention become necessary.  She made the point that should Allistaire require interventions like being on a ventilator or on ECMO (a crazy amazing terrifying machine that circulates the blood for the heart externally), we need to have a degree of confidence that she could come off of them.  Yah, because otherwise, what would be the point?  What’s the point of putting her on a machine to sustain her life if there is no hope for life on the other side of these?  This is what the ICU doctor alluded to the other day when she said we needed to discuss codes.  If Allistaire codes, if her heart stops, should they intervene, should the room become a mass of swarming bodies intent on reviving her flesh, pulling it back from that dark place?

I’ve been here so long, circling, pacing, hunting and being hunted.  “Jackle on your heels,” is how my friend referred to it yesterday.  The shock doesn’t let up.  It seemed at last we had that beast pinned, we needed only to enact our last attack, the last twist of its wily neck to break it for good…but then I feel the unexpected pressure of noose cutting off my airway.  Without sound, without anticipation, the breath is being extinguished.  I stutter and am confused, “But don’t you see, don’t you see, we’ve almost killed this foe?  What are you doing?  Let me finish this act.  Let me at long last put an end to this stalker, that I have danced with night after night, lacing through the trees in the dark of night forest.”  No response, just greater and greater constriction.

The cardiologists have increased her Milrinone to .75 now and taken off the Carvedilol.  Apparently the Carvedilol can not only help with heart failure, but can actually induce it when the heart is so, so sick.  This morning they will have to hold her Digoxin because her potassium is a little low.  It is ever a careful, delicate balance, intricately monitored.  They can go up on the Milrinone, only to 1 or maybe 1.2 and then they would consider adding other meds, norepinephrine and/or epinephrine.  I feel myself giving over a little, letting go a little of my desire to be so involved in the details of this med or that at this level or that.  I am drawn to her neck, that warm incredibly soft place where I should like to stay.  I am pulled to gaze at her cheeks, the perfect slope of her nose, to run my hand up and down the beautiful softness of her arm, to listen intently to her sweet voice.  I wish to dwell forever pulling the curve of her little body into the curve of mine.  My whole body grieves the thought of ever being separated from her, having her pulled  gently, silently away, away…

Perhaps I can just take her and run.  How I long to soar with her away from this place.  I am just now realizing I had dreams of flying last night, of running soft through the grass and then just lifting off.  But there was too a severe hill, so steep that you could never, ever climb down, rather it was a ledge, a cliff.  But the girl in front of us said she thought she could make it despite having seen her brother fall straight to his death.  I told Allistaire, who crawled behind me, No, we will not go this way, we will go around, we will find another way down.  And then that girl jumped, she just leapt and indeed fell utterly to her death. I felt flattened as I slept last night, every single surface of my body pulled so heavy against the couch/bed. My face is flat.  It is weary and aches dull from hard crying.  A new beautiful day has come.  I acclimate, I adjust to this new reality.  Just I have done on countless turns in this spinning world.  Get slammed.  Slowly arise.  Walk tentatively, knowing it is likely you would be slammed again to the ground, cranium ground into dirt.

The light is growing longer in the evenings and on these clear days I am transported back to late summer evenings with Allistaire, out on pass from the hospital, going to Magnuson park after all the other kids have gone home, and then we come to play.  We would arrive as late as we could back to the hospital.  There is a sweetness to those memories, a glow of mango light at the horizon blending into green and the vast stretch upward into perfect blue of night.  Birds singing in the evening and trees all lush, green upon green.  I remember clear still mornings walking high on the sky bridge of the 7th floor, Mt. Rainier looming blue to the south, awaiting that pink fire of first sunlight.  The cold of new day, birds, ever singing, twittering, calling, glorying in their existence.  I felt strangely serene, with the cold clear thought that perhaps I was there to help her die well, to stay by her side, loving, caring for her through each step toward that end that seemed ever closer.  Those days two years ago loop around wide to now, linking, completing a circle.  I think back to those days and raise up those truths, those clarities the Lord showed me then.  The suffering and the joy sit side by side, neither undoing the other, both deep, both broad, both stretching to the horizons, swamping and flooding my heart.

The music slows, vast space between each note.  My heart calms, slows, rests.  As I came down the hall to the Unit at the end of nap time and saw that perfect white sparkle of first star, alone in the evening sky, I paused long, wondering, wondering, what do I pray?  What do I come to You and ask oh Father, oh Father.  I seek to abide in you, rest in you, just rest, still my sore arm from its work, let me lie here and rest in You.  I have no idea what the days ahead hold.  I have no strength to look out long, scanning the horizon, squinting to try to make out what is ahead of us.  Rather, I shall curl here with my sweet girl and rest in the shadow of His wings, sheltered, beloved, held.  Be still my soul.

 

20 responses »

  1. While I feel like I am intruding into your private space, my heart just aches for all of you. I continue to offer up prayers for all of you on your journey through this wilderness, thankful that you have such tremendous faith in the Lord. May the shelter of His Arms continue to give you the support and comfort you need. This comes with prayers upon prayers!

    • I would like to add that there are many facebook posts traveling the world around with today’s entry. Many people are interceding on your behalf.

  2. I cannot imagine what you are going through. I do want you to know that I am praying for you and for Allistaire and your family. May the God of all comfort be your Strength.

  3. What can I say? Words seem so empty… So, I go to God’s word and pray that it brings some measure of peace or comfort or strength or hope.
    “My flesh and my heart may fail, but GOD is the strength of my heart and my portion forever.” Psalm 73:26
    Always in our thoughts and prayers.

  4. I join in lifting you and Sten up as you wait upon the LORD….as you have said before HE is the one who lifts you up and carries your burden…..sending ((((HUGS))))) from GOD & me with prayers…HIS LO❤️E & mine is

  5. Keeping all of you in my prayers…may God continue to give you strength, comfort and peace of mind for EACH new day as you face so many unknowns. I have shared sweet Allistaire’s “life journey” with members of my family and close friends. Prayers are being sent on your behalf from here in CO, NY, GA, WI, IL, AR, ID and CA. Praying too for safe travel for Sten. Psalm 46 1-11…especially verse 10a: “Be still, and know that I am God”.

  6. Know that you are loved and prayed for. I cannot put into words how this report touched me; but just know that I stand with you in prayer. A sister in the Lord

  7. There are no words, but there is HOPE in the Lord. Where there is life there is hope.
    Hang on to Jesus and the hope He is. He will never leave you. Caring, praying and loving
    you all. Psalm 3:3 ” I AM A SHIELD AROUND YOU AND THE LIFTER OF YOUR HEAD.”
    Thank you for sharing Allistaire with all of us. We love her too!

  8. I sit with my hand over my mouth.
    There are no words. This is too intimate. Too private.
    I remember Job’s friends who came to comfort him when he was in such deep pain and loss….
    …who could only sit with him… and say NOTHING… because they saw how great and deep his suffering cut. And I am not even a friend.
    But I am a Sister.
    I love Our Jesus.
    A friend of a friend shared your story in our NC Bible Study two years ago and I am bonded.
    Bonded on the other side of this expansive country…way away from Seattle. Strangers but Family.
    I pray and cry and plead and thrill and gasp and hope and beg PLEEEEEEEEZZZZZE JESUS!!!!!
    Be reminded, Jai….Know you are not alone….this is how The Gospel works.
    We are linked together by HIs Blood….
    This is your story. You have invited us in. It has become ours, too. Strangers…but Sisters.
    The GLORY IS ALL HIS….
    So show YOUR WILD SAVING GRACE, JESUS….Breathe Your Holy Spirit of Healing into Allistaire!
    WE WAIT IN HOPE FOR YOU!
    Very Amen!

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