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I'm an RN, respiratory therapist and surgeon.

I'm an RN, Respiratory Therapist and Surgeon

I was standing by our daughter's hospital bed, talking in delicate terms about the possibility of her death with her doctor, who has become a personal friend through the more than two years she has been his patient. The conversation was far from complete when in strolled a rather brassy young respiratory therapist arriving to do the every-two-hour chest percussion therapy ordered for Bethany. Our doctor friend had not yet done his own morning exam and, seeing that the therapist was in a hurry to get her rounds completed, I gently offered to do the percussion therapy for her so that she wouldn't have to wait and we wouldn't have to postpone our needed conversation.

"Well, I don't know," she answered, obviously startled by the suggestion. "Has someone trained you? Do you know how to?" With a calm and confident smile that came from more than two years of such therapy at least six times a day, I looked across the bed to our doctor and said, "What do you think?" With an equally casual smile and a slight nod of the head, he answered, "I think he'll do fine."

ATTITUDES

One of the most fascinating aspects of the two and a half years we have spent raising Bethany has been the incredible variation in the medical community's trust and reliance in our ability as parents to cope with her medical needs. Some doctors, nurses, and therapists have treated us as incompetents who they thought were merely in the way. Others were sure they were doing us a great favor by sparing us from the nitty-gritty care she required. On the other hand, some have been remarkably cooperative and encouraging in trying to train and equip us for her care. Interestingly, that training has fostered among still others an attitude almost of awe as they have watched us display our acquired adeptness with suctioning machines, feeding pumps, and yes, percussion therapy.

Bethany was born with motor neuron disease, a rather rare disorder that adversely affected her entire voluntary muscle system. Like two of her three sisters before her, she was born at home, where her family could hug and cuddle her safe from the bright lights and intruding regulations of hospital life. But unlike her sisters before her, life at home was not to be a way of life for her for long. Rushed within hours of her birth to a local hospital, Bethany and her parents were given a quick course in the harsh reality and tender concern of doctor-parent relations.

I'll never forget walking into the Emergency Room that I had frequented as a pastor by the side of a concerned or grieving parishioner, now for the first time as a concerned and uptight parent. Separated from my wife and baby who were seen immediately by a local pediatrician, I was whisked off to fill out the necessary forms. Having completed that ritual, I walked to the room to which I had been directed, opened the door and saw standing there a man wearing a bright red Mickey Mouse T-shirt, gold chains around his wrists and neck, and a Pennsylvania State Police ball cap on his head. Convinced that I had entered the wrong room, I began to make a hasty retreat when this fellow turned and said in rather harsh tones, "Are you the Father?" The shattering truth hit me. Silently I thought, "Are you the doctor?" while my voice offered a trembling, "Yes."

Probably because none of us knew how serious and life-threatening Bethany's situation really was, and because we were all strangers more than a little frightened for this little girl's life, the next few minutes were something of a nightmare. The pediatrician proceeded to tell us how negligent we had been in having a home birth and what severe measures he would now have to take to counter the possible effects of that negligence. I remember feeling as though he regarded us as the enemy for having violated the sacred howto's of having a baby in 20th century America.

How radically the whole scene changed when, having given the doctor permission to do whatever he felt was needed, I pleaded that he just let my wife be with the baby as much as possible and broke down crying. Now the attending nurses who moments before had seemed aligned against us had tears in their eyes, the doctor's tone softened dramatically and we had turned from an alien foe into fellow human beings in need of warmth and support as well as some speedy care for our baby. Just how different attitudes had become was evident a very few minutes later when, dressed now in surgical greens and preparing for a minor procedure, the pediatrician quipped in our hearing to one of the nurses, "Maybe the parents would feel more confident if the doctor didn't wear a ball cap into surgery."

LOOKING BACK

Looking back to those days from a perspective of two and a half years of constant care and training and regular contact with the medical community, it staggers me to see the changes that have occurred both in our self image and in the respect given us by our care providers. In those first three days in our local hospital we were completely in the hands of folks we didn't know. Their competence and caring, beyond those first few minutes, has bound them to our hearts forever. A whole floor of nurses, some of them doing double shifts because they were the only ones trained in heart monitors and nasogastric feedings, took an interest in our family that runs strong even today.

Subsequent visits there have even reversed the process a bit, as we, fresh from weeks at the big city hospitals, used heart monitors and the like with the dexterity of old pros.

But nowhere has the contrast in parent participation in Bethany's care been more noticeably flip-flopped than in our first month in a big city hospital. Bethany was transferred there after three days because it became obvious that her problems were not birth related but ones which would require sophisticated testing and treatment not available at the local level.

A lasting impression from those first weeks is that the doctors and nurses in the neonatal intensive care ward expected Bethany to die, sooner or later, and probably sooner rather than later. These folks were kind and considerate, encouraging us to see her as often as we were allowed. But never were we allowed to watch, let alone participate, in any of her routine care. Part of her muscle weakness showed up early on in an inability to swallow well, requiring placement of an NG tube and later a G-tube. Never were we allowed to watch an NG tube inserted. Doctors' consults were almost always private affairs from which we were barred. And though one or the other of us was in the hospital for more than a month around the clock, our involvement in Bethany's care was extraordinarily limited.

QUICK TRAINING

Limited, that is, until she failed to die and it was necessary to ship her home. Suddenly, we had to be the sole care providers and thus were sped through a blistering pace of training sessions in checking tube placement, CPR, heart monitors, and more. When we left that hospital, with our still very sick little one month old, we had so little confidence I think I can honestly say for both of us that we thought that she would probably die on the trip home.

The next several weeks entailed a flood of visits to a wide variety of specialists: neurologists, gastroenterologists, orthopedic surgeons, and the like. By each one we were treated with respect, encouraged to ask any questions we might have, and by some even invited to participate in decisions about Bethany's care. But most of the time their comments and activities were incredibly compartmentalized. We could talk stomachs with the stomach man and nerves with the nerve man but seldom could we talk about Bethany. And almost never could we talk about life with Bethany for the long haul, supposing she made it longer than any of these doctors thought she would. (None of them gave her more than six months. That was two and a half years ago.)

What all of them failed to see was that while they might or might not have a few answers to Bethany's problems, we, her parents, were the ones who were going to be her principal care providers, the on-the-job experts who were going to mean life or death to her more than anyone except the good Lord.

HOME BECOMES HOSPITAL

That all did not become clear to us until we found a doctor (my companion at the beginning of this piece) who both understood our role and made us understand it as well. He seemed to sense immediately that our home had become a hospital and that we were administrators, physicians, therapists, and RNs rolled into one. And after a thorough exam of Bethany he spent more than two hours focusing on our needs as a family hospital, arranging for the proper equipment to make it as simple as possible and even prescribing night time nursing care several times a week so we could both get a full night's rest.

That session more than anything else opened our eyes to our role as primary care providers for our daughter. It wasn't that we were given any more hope that Bethany's chances were improved. But more important, we saw that even emergency rooms develop a routine of care that enables them to function with an attitude of calm and normalcy in the most traumatic circumstances.

PARENTS AS PRIMARY CARE PROVIDERS

In a sense it was as if someone gave relative control of our daughter's life back to us. If any of our other kids fall down and skin their knees, I don't go running off to the medical community. I go to them in cases of emergency or for occasional long term evaluations. That same attitude was restored to us with Bethany, only the ante was upped a bit. The responsibility for her care didn't involve just tying shoe laces and changing diapers but doing deep suctioning, placing NG tubes, percussion therapy around the clock every two or three hours.

The greatest frustration for us in caring for Bethany is that while we got set straight upon our proper role more than two years ago, every time we meet a new medical provider, we have to go through something of an indoctrination period where we convince them of our abilities or even just our knowledge about Bethany's care. And that period often involves significant suffering to Bethany herself, for example, when a new doctor carries out a medical procedure in a way that we know from experience to be incorrect for her.

What are we to make of all of this? Are there conclusions that can be drawn in order to ease parents into their proper role as primary health care

providers of their children, particularly those with severe medical problems? I think there are.

ASSERT PARENTAL AUTHORITY

First of all, parents simply must at all times assert their proper authority for their child's care. The medical community, though I admit they often don't act like it, are your assistants in the whole-life process of raising your child, not the other way round. The doctor or surgeon or RN will not be there the time Tommy almost chokes to death or Suzie comes down with a fever. You will be. And you'll be the one forced to deal with every social, emotional, spiritual, and medical crisis of their lives. Insist on the best care and on full involvement at every level you desire, resorting to being obnoxious only when all else fails.

That will never be easily accomplished for two reasons at least. Often, crisis situations develop when you won't want, let alone be permitted, direct involvement. Or in the case of long term hospitalization, times will almost certainly arise when turning responsibility over to the medical community is a welcome relief.

It is also essential to remember, however belligerent one may feel at the time, that you are dealing with an organization that has limits and rules. And the folks responsible for your child's care are legitimately bound to play by those limits and rules, which were after all established for reasonably sane reasons most of the time. Choosing to come to a hospital involves some acquiescence on the part of the parents. That is a cost, not measurable in dollars and cents, that must be counted before going.

Second, the medical community would be well served by regarding the parents as equal partners in the care of their child. Equal in the sense that both parties share responsibility for the child's well-being. Skill levels are certainly not equal and a physician would be guilty of gross negligence to go against his own trained responses on the whim of an inexperienced parent. But no matter the expertise provided by the medical community for the few minutes or hours or days or weeks a child is in their care, it will all be for naught if the parents are left isolated and frustrated and cut out of their child's on-going care.

PARENTS AS PARTNERS

If those two suggestions seem out of balance, parents seeing the medical community as assistants and the medical community seeing parents as full partners, consider it my affirmative action proposal to redress past inequities. That is to say, parents being too assertive in their relationship with health care providers has seldom been a problem in the past. The reverse situation has in fact been a frequent problem.

Just how bad the situation is depends of course entirely on one's point of view. All of this is obviously a parent's perspective that fails to take into consideration how hard it must be at times for doctors to deal with emotional, uninformed, belligerent parents. They are after all, whatever they or we may think, folks whose lives are governed by the same kind of emotional and professional pressures as anyone else. It's not easy to have a distraught parent watch with a critical attitude your best efforts to get a difficult I.V. started, or to have them not trust your best judgements. Perhaps all would best be served by adopting a regard for one another as fellow human beings with different responsibilities and different pressures upon us.

PHOTO : John Dorean with his daughter, Bethany.

PHOTO : Bethany and her father at the beach.

PHOTO : John Rich Dorean is pastor of the Jefferson Baptist Church in rural Jefferson, Pennsylvania. He is the former first president of Greene County Habitat for Humanity, and serves on the Greene County Human Services Commission. He and his wife, Merry, have four children, Emily, 13, Carrie, 10, Hannah, six, and Bethany, two.
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Copyright 1989 Gale, Cengage Learning. All rights reserved.

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Title Annotation:parenting a child with a disability
Author:Dorean, John Rich
Publication:The Exceptional Parent
Date:Jul 1, 1989
Words:2499
Previous Article:"Our son's school problems surprised us." Adolescence and independence.
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