Think broadly, because that is the nurse's very essence

 

“Keep the kids alive, and don’t think too broadly” — **לשמור את הילדים בחיים, ואל תרחיבי ראש**.

 

Those were the words of the new vice manager of “KidVille,” a special-needs rehabilitation kindergarten. I asked her, "what are your expectations of me", and the above was her answer.

I had already been working at "KidVille" for about six months, initially in place of another nurse's maternity-leave replacement. At the time, that arrangement had seemed ideal: I could try the workplace, they could try me, and if it proved to be a good fit, I could stay. If not, there would be no hard feelings.

 

In retrospect, perhaps those words should have told me that it was time to leave. But if every experience can become a learning experience, then staying became part of the experiment.

 

The kindergarten that followed that six months was an experiment of sorts. It was a continuation of the organization's daycare program, adapted so that there would be a place for “Bonnie” not her real name, a delightful and engaging four-year-old child with substantial medical and developmental needs.

"Bonnie" was also extraordinarily engaging. Each of these kids really brings a special gift, regardless of their limitations.

Her parents were unusually capable of managing the tremendous demands placed upon them. I had begun to understand that families caring for children with severe disabilities can carry enormous burdens of worry, exhaustion and sometimes guilt, all of which can affect their ability to absorb information and carry out complicated treatment plans. "Bonnie"'s parents seemed remarkably resilient, and were deeply involved in her care.

During my first six months, I worked under “Leah,” also not her real name, whose management style was extremely hands-off. Almost everything seemed to be “fine.” I could monitor the children as I liked, you know, "fine", but that approval changed nothing in the institution's systems, and that should have been a red flag for me.

 

A vice manager was hired, and here is what she told me:

“Keep the kids alive, and don’t think too broadly.”

Second red flag.

 

Keeping a medically complex child alive is obviously the first responsibility. But nursing also means observing, assessing, identifying trends, preventing deterioration, educating families, communicating with other professionals, and asking what can be done today to improve the child's health and functioning tomorrow.

 

I was able, in effect, to “grandfather in” the intensive involvement I already had with "Bonnie". I explained to the new vice principal that her parents were accustomed to my daily reports, so, she said it could continue.

 

The deeper conflict emerged when my attention turned to another child who was markedly underweight and whose nutritional and hydration status increasingly concerned me.

 

One aide alerted ,e "why is her dark under his eyes,?"< I took his pulse - 160 for a 5 year old was tachycardia and a sign of dehydration, I called the mother, who I already understood was not functioning at her best, to make a long story short, she requested an ambulance, and asked me to accompany her son while she drove behind, the paramedic asked me for his baseline personality to asses whether dehydration was causing him to be so subdued, he managed to insert an IV after many attempts and we got the child to the hospital, in which he was admitted for dehydration, IV fluids, and a recommendation to have a gastro tube placement. The mother teared up when she heard, "gastro" but I retorted, "ok so it's their recommendation and not on your head now, gastro tubes are often only temporary anyway, why not just forget the headache of the struggle to feed him? Hey, this is great news!" And I danced a jig and made her laugh.

But the next step was slow in coming. Agreeing to a gastro tube for feeding can be a very fraught decision, an admission that the child is really unwell and won't get better any time soon.

The vice principal's comment on all of this was - "why did you go? (to the hospital)." Not, "how is he, how are you?" But a curt, "why did you go?"

 

Another red flag.

 

So I kept holding up the wall.

 

His intake continued to be poor, so I sought measurements: How much did he eat? How much did he drink? How much urine was he producing? Was his weight changing? Was he receiving enough calories and fluid to meet even his basic physiological requirements?

 

I began gathering objective information. I tracked intake and output, and I made charts for the parents to fill out at home, which they complied with some of the time - and I found that his intake was indeed poor at home as well. I weighed diapers to estimate urine production. I researched basic fluid and caloric requirements and prepared educational information. I wanted the parents to understand concretely what their child required rather than simply hearing another general recommendation from "KidVille"'s management to consult a nutritionist. I filmed the child as I fed him different consistencies of foods, and noted that his tongue was pushing some of the food back out, and I emphasized this on the clip I sent to the parents." This got no recognition from the management, in the vice principal's words, "we have to respect the parents choices."

 

I do respect choice. But I suspected that the parents were not making an informed choice.

 

Parents cannot make meaningful choices if they do not understand the medical facts upon which those choices depend.

 

This became a fundamental philosophical difference and a strain between myself and this vice principal.

 

The management approach, as I experienced it, was more minimalist: recommendations had been given; the parents had been advised whom to consult; there were limits to how much the framework should intervene. 

 

My approach was to ask another question:, please listen well:

**Do the parents actually understand the problem?** 

 

If a medically vulnerable child continues to deteriorate despite previous recommendations, should we find another way to communicate, measure and intervene?

 

I pressed for multidisciplinary involvement, which meant circumventing this vice principal. The parents received more specific information, and the child ultimately received an intervention. He subsequently began gaining weight. (The father thanked me personally for my "דייקנות" - precision and wrote me a warm letter of recommendation.)

 

This was not the only area in which the increasing medical complexity of the children raised questions.

 

The organization had children in two separate wings, approximately a five-minute walk apart, who could require rescue medication followed by nursing observation. I believed that this level of acuity required appropriate nursing coverage in both locations. A nurse administering rescue medication to one child and remaining responsible for monitoring that child could not simultaneously be relied upon to hurry across the campus if another medically complex child required urgent care.

There were environmental issues as well. On one occasion, drilling and ceiling work created noise and dust while medically vulnerable children were shuffled to the next room, but I told the staff that I do not see this as sufficient protection for the children. They dismissed my concerns. I called the principal repeatedly to come and monitor, and she claimed later that she had been busy in meetings - another red flag - should not the repeated calls from a nurse be taken seriously enough for a brief pause in all her meetings? In response to me saying, can't this work be done before or after school hours? the vice principal quipped, "8am to 3pm are his work hours. We are not asking him for overtime." Click went the phone.

I had to get out, and I kept holding up the wall.

I then researched the relevant official safety protocols and presented them to management. Then the discussion shifted toward whether I had spoken too sharply to the maintenance worker rather than toward giving me clear assurance that the underlying hazard had been recognized and would not recur.

Professional communication certainly matters. People deserve to be spoken to respectfully. But when a nurse identifies a potential hazard, the first institutional question should still be: **Is the hazard real, and how do we prevent it from happening again?**

Back to "Bonnie".

 

Over time, I began to see "Bonnie"'s presence as representing a fork in the road for the organization itself. She had been "grandfathererd-in" and was allowed to receive the ongoing monitoring that I felt necessary and was glad to do.

 

The question was what came next.

Would the organization increasingly develop the infrastructure required for medically complex children—stronger nursing systems, clearer protocols, objective monitoring, emergency preparedness, continuing staff education, environmental safety standards and structured communication with families?

Or would it remain essentially babysitting, designed around children with comparatively lower day-to-day medical needs?

Either can be a legitimate institutional model. But babysitters should not accept children with complex needs if they are not going to grow in their standard of care in responding to those needs.

 

There was also an interpersonal cost. At times I experienced being ignored, spoken over, met with eye-rolling or cold responses. Gradually I became more guarded and emotionally on edge and admittedly probably spoke as if I was on edge - it was a vicious cycle, and not a good condition in which to practice nursing, and it is certainly not conducive to healthy multidisciplinary work.

But I actually decided to run with this, that is, I considered why I was running into resistance. Ok, well, I learned from Iain Ryrie, God rest his soul, my talented high school drama teacher and mentor, to see yourself as part of a greater whole, to respect the team effort, and in that mentality, you cannot step outside and point fingers, quite the opposite, you need to flow with the culture to bring out the best possible event. Ok, that was on stage, but if life is a stage, and anyway all things end in this world, then why not try out really seeing this from the point of view of the staff, who were totally unused to much direction. If I was too overbearing and school-marmish, ok, let's try something else.

I started to ask the staff if I can make suggestions or tell them a few things, say, about the balance between stimulation and overwhelm for the neurologically impaired child. Or the risks of hypothermia, which one child was prone too, "wow that is so scary" one staff member remarked, and "I did not know that at all" quipped another, relieved to hear what I was sharing.

Two new aides joined the team, I had grown accustomed to asking permission to share rather than speak with the air of assuming that everyone wants more knowledge.

And it worked.

These two assistants wrote warm letters to me, thanking me for "the knowledge you shared and how you put your whole heart into it' and, "it is so fun to work with you."

So in my mind I was vindicated inter-personally.

I have carried that into my next job and into my personal life - just some more care in "may I say something, may I offer something?" departing from the words on paper and entering the person who is meant to be shaped by them - was that not Iain's message? When words become a person?

So I gentled. The staff warmed up to me.

But management remained hands-off and minimalistic, and no amount of charm could mend that.

Eventually, my employment ended, a few minutes after the end of year party in which the father I mentioned above thanked me for my precision, and departed, I was told - that's enough. Funny timing, huh?

And that is because the deeper issue was a difference in philosophy about what nursing should look like as the medical complexity of children in a day-care rehabilitation setting increases.

I do not believe that every rehabilitation kindergarten should become a hospital. But when an institution chooses to welcome children with greater medical needs, the institution itself must grow with them. Nursing coverage, staff education, documentation, emergency planning, infection control, environmental safety and communication with families must evolve along with the population being served.

“Keep the kids alive” is indispensable.

But for me, nursing begins there. It does not end there.

I want to ask why a child is losing weight. I want to notice whether fluid intake is declining. I want to recognize a respiratory trend before it becomes an emergency. I want parents to receive information they can understand and use. I want staff to know not merely what a procedure says, but why it exists. And when a medically complex child is admitted to a program, I want the institution to ask not only whether it can accommodate that child today, but what it must learn and become in order to care for that child tomorrow.

And I was honest at my job interview which I secured within a few days at, let's call it, "King of Peace Nursing Home" near Tel Aviv.

Here is what I said, "listen, stop me at the door if you want, but do not stop me in my throat. Do not tell me not to think. If you say, "thank you for your creative ideas, Rebecca, but we can not execute them here" I will respect that. But if you say, "do not broaden your vistas" then we may as well have this on the table now, because it will not be a fit."

The head nurse retorted, "I am looking for nurses like you, when can you start?"

Perhaps that is what the experience at "KidVille" ultimately taught me about myself.

I do want to think broadly. And the reward will come, the correct fit will happen.