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Sunday, September 07, 2008

Networking in Times of Need

By Danielle Lum

Hawaii Bureau Chief

On April 30, 2008, my mom was transported by ambulance to the emergency room in respiratory distress. Later that day she was moved to the Intensive Care Unit and intubated, wholly dependent on a respirator to help her breathe. One hundred and nine days after her ambulance journey, mom went home – and in those three and a half months, I learned valuable lessons in networking.

A bevy of specialists, nurses, technicians, social workers, and administrators streamed in and out of her room. I kept notes of their names, their purpose and what they said to us. Some handed over their business cards, displaying impressive titles like thoracic surgeon, pulmonologist, and unit director.

But over the course of mom’s road to recovery, I would learn that it was the people without business cards that would make the most difference.


We questioned everyone who entered the room, and they used official sounding words and twiddled their stethoscopes as they spoke with us about mom’s condition. During the first days I took copious notes of her treatments, prescriptions, and lab results, even though the words were foreign and numbers were basically meaningless to my brother and I.

After the first few anxiety-filled days, things settled into a rhythm. Labs were ordered in the morning, so I would call the ICU at 5:30am to see what the morning’s numbers brought. When I arrived at 9:00am (the start of visiting hours), I would ask to see the day’s x-ray results. Even without total understanding, knowing the results gave us some measure of comfort.

Then came Paul. He is a day shift charge nurse who cared for mom on her second day in the ICU, and oversaw her care when he wasn’t directly caring for her. He took us step-by-step through her CAT scan, her lab results, and x-rays, explaining what everything meant, what was considered normal, and what numbers told whether she was improving.

We talked with the respiratory therapists and nurses – all employees who didn’t have business cards – about the pulmonologists at the hospital: Who was the best? Who gets the best results? If it were your mother, which doctors would you want on her case?

We listened like sponges. We nodded and asked for clarification when needed. We talked with anyone who came into the room, from the custodial staff to the nurses to the doctors. When security guards did their thrice-daily rounds of the ICU floor, we smiled, waved, and exchanged “how’s it going?” commentaries. Each day I ate lunch in the cafeteria, engaging the staff in small talk and calling them by name when possible (thank goodness for nametags!).

When we went into the waiting area, we chatted with other family members, forming a bond with others in crisis.


About 5 days into our ordeal, I knew the name of every day shift nurse, respiratory therapist and lab tech on the ICU floor. I spoke fluent hospital-ese and knew what all the settings on the ventilator meant.

This made mom’s doctors nervous. Thanks to the people who didn’t have business cards, I knew what questions I should be asking the doctors, and had a fair idea of the answer I should expect. When too many days passed without us seeing the doctors, the nurses suggested a good time to arrive at the hospital that would just happen to coincide with the times the doctors were doing their rounds. When I pointed out that the time was well before visiting hours began, they replied, “So? I’ll let you onto the floor.”

About 10 days into mom’s stay, the cafeteria staff greeted me by name and, get this, gave me the employee discount. They asked how mom was doing and whether it looked like she was going to get off the respirator soon. The cafeteria manager even made green jello (my favorite) just for me.

The ICU staff awaited my daily 5:30 am call and had the lab results ready to go. (Humorously enough, there were days that I overslept, so when I called in, the person answering would remark that I was late!) When I arrived at the hospital at 9:00 a.m., I could walk to the ICU door and get buzzed in without having to go through the rigmarole usually associated with getting onto the floor.

Certainly, all of the nurses were competent, but there were some with personalities and work styles that pleased us more than others. We noticed that these nurses tended to be assigned to mom’s care more so than the others. Serendipity or by design, we weren’t going to question.

One day there was a power outage in the hospital and the ICU director immediately chose mom’s room to oversee and make sure that everything was in place should the ventilator not respond to the back up generator. The outage lasted about two hours and she stayed with us the whole time.

Over time, we got to know the caregivers on a personal basis. Paul flew to Japan to propose marriage to his girlfriend. When he came back, he shared his photos with us. Upon hearing that I used to work for the teachers’ union, Val shared her story about her sons and asked my opinion about what to do. I was more than glad to help her. Chona shared stories about her miraculous twin girls. Others referred business to me upon learning that I’m a public relations consultant.

Our parking pass, at first renewed on a week-to-week basis, suddenly was lengthened to two weeks, then three. As I would leave the admitting clerk’s office, she would send me off with a cheery, “I hope I never see you again!” Meaning, she would never have to renew my parking pass because mom would be home and on the mend.


Her doctors – one in particular – didn’t hold out much hope for her recovery. He called her state “permanent” and urged us to determine what we wanted to do, where we wanted to send her, once she was stable enough to be discharged from the ICU. (Incidentally, we asked that doctor to remove himself from her case. We kept the pulmonologist who shared that his vision was of her walking out of the hospital under her own power, sans attachment to any assistive breathing devices.)

The nurses and other staff members, however, had a different view. They didn’t give up. They cared for her and advocated on her behalf. When her muscle tone deteriorated, we asked Paul if physical therapy would help. He went to the head of the physical therapy department to get them to take on mom’s case – it’s very rare that a patient on a respirator gets physical therapy because of the obvious constraints, but Paul’s persistence paid off.

The nurses recommended we ask for special procedures, always with the caveat, “you thought this up all by yourself.” And sure enough, undertaking the procedures marked a turning point in mom’s recovery.

As mom improved, everyone remarked on how good she was looking. The custodian who cleaned her room daily for the three months gushed with joy the first time she saw mom sitting up and reading the newspaper. Staff members cried the day her tracheotomy entry way was capped and they heard her voice for the first time in three months.

When Paul piled her and her equipment into a wheelchair and took her outside to see the hospital grounds, the nurses cheered. When she took her first steps to the doorway of her room, all the nurses on duty that day gathered around to give their encouragement.


One hundred and nine days after admittance, mom was cleared to go home. She would have oxygen delivered via nasal cannula, but she was going home. She was one of the rare patients that got discharged directly from the ICU without ever being sent to the medical floors of the hospital.

The staff gave her ice cream, a card, and lei. They hugged her and told her how proud she made them, and made her promise to come by and say hello.

And as we drove off, leaving the hospital in the rear view mirror, more than one face was streaked with tears.

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1 comment:

Anonymous said...

Thank you so much for sharing this story of inspiration,encouragement, and enlightenment. You have given me so many ideas on real things we can do as advocates for others, or even ourselves! It was well-written,beautiful, and am so glad that your mom had such a happy result.

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