Sunday, February 13, 2011

DECLAN: A Story of Capabilities and Limitations

Been a spate of silent days. That blank tape syndrome, you'll recall. Well, actually I was all set - after trapsing through some of my "on air" haps and misses,

to introduce you to a 'pro' I'd profiled back in the day. A guy who did his work well, with flair and devoted following. But what with getting Valentine goodies for the grandpeeps, wandering down the Valentine Memory Lane and then - quite serendipitously, HONEST! - getting an email from a very dear, close, old friend in which she ASKED about one of our children, I am moved to switch gears and profiles and intros and answer her query here by introducing you to Declan.

Recently another dear friend sent me a PDF version of his story which I am told I can deftly place right here. No problem. Of course, no CLUE either as to how this prestidigitation is to be effected (& even if I succeed, I shall probably ALSO "place" every iota of extraneous text/imagery as well) so I will just give it ONE shot & if, after I yell "PULL" & shoot nothing happens, I'll just peck it out for you.

On the evening of February 17,1984, our 16 month-old son, Declan, aspirated a piece of browniie containing fragments of walnut. He'd been laughing. On March 15 - a Thursday afternoon, he died. At Christmas we'd had 4 beautiful, healthy children. I was finally able to write this at Easter. We then had three.
As with all tragedies, much of the experience is personal, unique. But Declan was also a member of a community, a neighborhood, a region. He - and we - were fortunate that he lived in Hampton Roads. If you are fellow residents, you deserve to know why.since we trust ourselves to each other everyday. Today, in 2011, as Americans, you are equally deserving, for the same reason. Declan's story has to do with capabilities and limitations. It is a point of reference from which we can all hope to see progress but with which we must live in "the now". That Declan had to die is, we believe, a fulfillment of God's far greater "story". But we don't ask that you share our metaphysics, just the experience of the way he left; a sharing that is secular and intended to evoke pride and hope.
Phil, my husband, had been a practiicng Emergency Medicine doc for 12 years. I had been a coronary care nurse. Ours, then, was a privileged perspective. Words like 'emergency', 'stable', 'critical'. have poignant, scientific meaning for us. "Baby', 'fear', 'protect' have equally charged meaning. Our professional qualifications allowed us to reconstruct events with clinical observations. Our credentials as parents were the same as yours.
We gathered late for a special dinner that night. It had been a good week for the family Phil and I, 14 yr-old Philip, 7 yr-old Julie, 3 yr-old Jennie, Declan and Poppy, my Dad who lived with us. By 7 that evening, Declan was bored, antsy, cranky. He toyed withe his brownie - mashed it up, spread it around (probably curious as, when I think about it now, he'd never had one before (I don't "do" desserts) and we've not had one since). And he took a bite. He was giggling when he finally stood up, wanting to get down from his chair. "O.K., Helen (often referred to him as 'Helen Keller' who also - initially - had that nasty little habit of cruising around the table, scarfing tidbits from siblings' plates), "it's time for that bath", I'd said, picking him up. Suddenly, I felt him jerk but there was no sound. Movements continued, his face turning red.
I handed him to Phil. He opened his mouth to clear it of food. There was nothing in his mouth. Still no sound — no coughing, no choking. I dialed 911.
An alarm shrieked silently through all of us. This was bad. Experience and exposure notwithstanding, there was terror in the air. My hands shook as I dialed. Yours might too, but you'd dial. Reciting our name, address and the nature of the problem sounded hysterical inside my head and yet I was coherent. The children and my father stood frozen— "Oh my God." "Daddy do something." "Mommy, Mommy." I told them to stand still.

Phil had by this time done numerous Hennlich maneuvers, applying sharp pressure to the abdomen to force air up and dislodge the obstruction from the windpipe. They didn't work. He alternated blows to Declan's back and chest. Nothing. The look of frustration and disbelief that I saw in my husband's eyes was undoubtedly mirrored in my own. We had to go beyond mother and father and son — and function. We brought him over to the counter by the kitchen sink and began cardiopulmonary resuscitation (CPR). When I tried to breathe into his nose and mouth I met with total resistance. Something was stuck in his airway. Phil quickly repeated all of the previous maneuvers to try to clear it.

I brought the girls and my father out to the front hall, turned on all the lights, and opened the front door wide. I told them to pray and direct the paramedics to the kitchen when they arrived. Phil was vigorously massaging the baby's chest and blowing into his mouth. Declan was gray and stiff; stomach contents were oozing out of his mouth and nose. We suctioned him with our mouths. The telephone rang. The paramedics. "MY GOD, haven't they left yet? Didn't they believe me?" In fact, they were en route. They questioned Philip, who stood next to us and relayed what was going on. Which was: "He's vomiting Phil." "No, he's dying Lorene." "Then you'll have to do a trach." "I can't." (Trach refers to tracheostomy cutting down into the windpipe so that a tube can be inserted to breathe a patient.) Philip, fighting for control, "They want to know if he is in respiratory or cardiac arrest?" "Both!" I handed Phil a kitchen knife as we hyperextended Declan's neck, his soft, blond, feathery hair fanning out
into the kitchen sink. "My dad is doing a trach, now." Phil somehow cut the skin. The blood was dark. No oxygen. The windpipe was so small. The drinking straw and the cut-off bail point pen were too big to use as temporary airways.
There was madness then, of a sort. "Don't die Declan," "BREATHE, baby!" "NO, God, no." Phil grabbed Declan's head and blew with all his strength into his mouth. We finally heard it — a wet, croaking gasp. Phil had blown the obstruction down and into the lung. The blood flowed freely and bright red now as we continued what became effective CPR. I checked his groin. He had strong, regular pukes. We all knew Daddy had brought Declan back. Phil and knew how much deadly acid and oil we had blown into his lungs. But maybe....
Suddenly — uniforms. The paramedics were in the kitchen getting out the equipment that would keep Declan breathing and beating so he could be moved to the hospital. They began four minutes from the time I had dialed 911. How hard it must have been for these young men. Phil
taught and trained the Emergency Medical Teams (EMTs). They are, in a sense, tested by him daily. With feelings of disbelief. trepidation and desperate urgency, they faced Dr. Leavy in his kitchen — a battlefield of blood, tears and vomit — for the most comprehensive of tests: to stabilize and transport his near-dead little boy. We had prayed for them to come and were so relieved to see them. But when we faced the fact that we had to relinquish control — stop doing things to and for Declan with our own hands — we felt the first blows of impotence which would continue to reign for the next 27 days.
They moved Declan to the breakfast- room table and began attaching the nuts and bolts of the life-support system that would allow safe transport. I checked on the other children, returning to find the paramedics and Phil still at it. Declan had gagged out the first breathing tube so they were putting in another. They were checking the position of this or that, and finally I couldn't stand it any more. "Can't we just get going?" "Well, M'am," he answered calmly, "we want to make sure he has a good I.V. running in case he needs any medicine on the way." I knew this. I had no right to say that. I apologized, and he understood. They seemed to be taking hours, but it was truly a matter of minutes. They do so much — tedious, complicated things — so quickly and so well that the helpless, terrified person standing by wants to say mercilessly, "Listen, hot shot. this is your job. Can't you step on it?" Well, it isn't — a job, that is. It is a series of highly skilled maneuvers performed under difficult conditions and aimed at saving a life. There can be no interference. It was agreed that Phil do the intubation, but beyond that we handed Declan over to them.
They were aware of our knowledge and our eyes. They executed their tasks flawlessly, speedily. They found time to comfort and reassure us. We ran blindly down the front steps. They remembered the blanket and to move with a coordinated effort as they carried Declan gently out into the chilly February night. We were grateful to and for our paramedics. Trust them with your lives.
And the police. A garden of squad cars outside. Police in every room. Now we adults know, don't we, that the police are there to help us. But there is still a vulnerable child that plays in the back room ofall our minds who says, "Police — must be trouble." There also is a vulnerable
grown-up standing on the front porch of our minds saying, "No problem — you all can go home now." So it is with a strange ambivalence that we seek and accept help. Part of me wanted to minding the rest of Norfolk?" But the crushing truth was that they had answered a call to 1125 Westover Ave.. a place where tragedy was in progress. And they were needed there — now sitting on the stairs holding Jennie, now kneeling, arms around Julie, watching Declan being saved. Standing beside Poppy. allowing him to cry. Talking with Philip; praising his courage, his father's work. Offering to calm me and accepting my rejection with mature grace. Washing the blood from the sink and cabinets. "The children shouldn't have to look at this." the policeman said.
They made the unbearable bearable.No one wants cops in his house, but we demand that they be right under the window when things go bump in the night. They must walk gently amid the rubble of human emotions. It's ugly — what they must see. It's beautiful — what they do. The next time you're talking to a police officer— waiting for your ticket or whatever say thanks for us.

The Emergency Room. Our other family. Stunned and silent. they
reined in their emotions and worked to correct the imbalances that could threaten Declan's life. We were in a small, quiet room. a place for shaking. crying, praying. We did all of these things and drank the first cups of what would be vats of coffee drunk during the long vigil. Softly-spoken words of encouragement, assurance of prayers. offers of continued support were all around us. Finally, Declan was ready for transfer. Everyone wanted to do more, to say he would be all right. But, like us, they could only surrender him — and hope. There are no routine emergencies. Declan's presented the dilemma they face each day — "Let what we've got be enough to save this life." They did what they could. And then they cried. That's part of emergency medicine. Maybe you didn't know. They cry for all of us. It's something to think about when the E.R. is crowded and you have to wait a long time to be seen for your earache. Declan would eventually that the available, known treatment used to keep him alive contributed to his death. At the house having no suction, we had to blow large amounts of destructive fluid and chemicals into his lungs along with the oxygen he needed. Whatever lung tissue was still healthy after that had to be helped along with high concentrations of oxygen and pressure to get the job of oxygenation done. This tissue eventually was damaged from the prolonged use of high oxygen and pressure. It was unavoidable. On the night of February 17th, the doctors could only hope that the initial
while his lungs healed.

There was a very special, state of the art place in your midst called the Pediatric Intensive Care Unit at The Childrens Hospital of The King's Daughters. There were two, full-fledged, experienced pediatric intensivists there all the time along with a highly skilled. educated and astute group of nurses. Add to this the endless and immediately available lists of specialists, residents and social service personnel and you know that this unit is nothing short of superb. We lived with these people and what they do for 10 days.
Their work is demanding, exacting. One drop more or less of a drug can take a life. Reading and correctly interpreting the maze of machinery attached to each patient can save entrusted to them gives new meaning to the words critical, fragile. The little people themselves give new meaning to the words loveable, vulnerable, helpless. The thing that comes to mind when I think of that staff is love — in all of its meaning. Their challenge is to fix the smallest and the most broken among us and to grab the little body from which life has almost completely drained, find the hole and plug it. They know some of their patients will die. But they never know which ones. Wouldn't it be easier, emotionally, to focus completely on the machines.
the numbers, the cold — but reliably there — steel and polyethelene aspect of their work? Sure it would. Instead, they love the child, love the family, over and over again.
It's a very high risk kind of love. He would hear friendly, cooing. comforting voices always around him. "Mr. Clown's gonna play his music, Declan. I'll put him on your head so you can hear him." "Let's see what the kids did today, Declan." (At the doctors' suggestion, the children sent daily tapes of their activities so Declan could hear their voices and they could be with him.) We knew about the nurses' hugs and kisses, their prayers with Declan. They were saying, "I'm gonna love you, you tricky little kid, even though it's gonna hurt like hell if you die." They had to face us and the children, day and night, answering so many questions in such detail, having to admit to that awful set of limitations. They desperately wanted the miracle to happen but after 10 days Declan's lungs were saying they couldn't function with the high pressures. Only a jet ventilator could deliver high oxygen with low pressures.
So, having worked so hard for so long, they had to turn their littleguy over to the Medical College ofVirginia for the only chance he had left.
It took 24 hours to fly the ventilator and a qualified inhalation therapist to Norfolk, prepare this special KD van, and then move Declan and all of his paraphernalia up to Richmond. It was with great care and courage that our doctor, nurse and paramedic escorted Declan to MCV. It was with great reluctance, hope and love that they left him there. It hurts not to be able to do the miracle.
Phil and I went up alone and settled into the Ronald MacDonald House. It felt safe and good — being in a house. We missed the kids. We were tired, scared. edgy. The staff at MCV would be edgy as well. Their new admission was a rare case a kid who had survived full arrest and serious aspiration in his kitchen, had normal brain function, no heart or kidney failure and had exhausted the miracle supply at KD. Only his lungs were shot. Would the jet ventilator be the key? Despite these dreadful odds, their embrace of Declan and us was complete from
the first meeting. Declan did not improve on the jet. Phil asked about ECMO — Extra Corporeal Membrane Oxygenation. It's like a heart-lung machine. Maybe we could rest Declan's lungs so they could heal while ECMO kept him alive. Consultations were made. It
wasn't recommended. It has been used successfully only on newborns. But, "We happen to have an ECMO team right here," they said.
The next day Declan started to decline rapidly. The ECM() team was
called. They would try to get him on. While they primed the pumps and the intensivists worked to keep Declan going. the surgeons explained to us how slim the chances were of surviving the treatment. There was a great danger of hemorrhage on ECMO. Any infection is fatal. The
pumps are geared for the small volume of blood in the neonate. Declan could die for any of these reasons. (Of course, we were in a large city, in 1984, with AIDS making a strong debut, priming his pumps with 24 units of donated blood. It gave me pause then and now.) If he doesn't get on ECMO, we thought, he'll be dead tonight. Yes, doctors, we understood. We signed the papers. It was a difficult discussion far all of us. They hated what they had to say. There would be a time limit. He could stay on for only 10 days. Any longer and hemorrhage would be certain. We could only hope that he could live on ECM() and his lungs would heal enough to work again on the jet. "If he makes it. he'll be the first in the world with his kind of disease," the surgeon said. They began at 4 p.m. At 2 a.m., Declan finally was on ECMO. Our children joined us the next day. team. The staff gently prepared the kids for the pumps, the motors, the tubes, the bleeding they would see. They helped them to see Declan under all of this to talk to him, to listened. They heard the truth. They saw how never to lose hope. And that other families had tragedy. They made friends. They learned how to support and be supported. A child Declan's age on ECMO was a new frontier. There were many technical problems, many close calls. We've After 14 days, the time came to turn off the ECMO machine. There had been no change in Declan's lungs. We talked to him, told him how much we loved him and would miss him. But we knew he had to leave and it was — would have to be — all right. He squeezed our fingers, wrinkled his nose when we blew on his face. His touch and reactions were playful, not desperate. Declan was not afraid. He knew no pain. no strangeness. He did not die alone or in silence but in the company of people who loved him enough to say goodbye.
MCV belongs to you. too. You needn't fear impersonality, a syndrome associated with large medical centers. It is warm and friendly, and people care. These same people made medical history that March. Other children will live because they had the courage to put Declan on ECMO. Maybe that was part of Declan's mission. Another part might be that two other children can now see with his corneas, still others fought their cancer with the juices from his thymus gland.
At Declan's funeral, there was a line of rescue vehicles, EMT's standing at attention. Nightingale (our rescue helicopter) hovered overhead at the gravesite. The staffs from KD and MCV were there. We released a dozen helium-filled baloons to escort him - and returned the salute to the gathered honor bearers. Declan could have left without a trace. He's left some rather large footprints for a little guy. But then, look at who his friends were.
Valentine's Day will be happy today - as it was in 1984. I'll more than likely NOT say the same of the Ides of March, 2011. L. . . .