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Maryam Albader was just 18 months old when her parents traveled
to Boston seeking care for the child’s long list of complex
cardiac, gastrointestinal and respiratory disorders. After 18 months
of treatment and several readmissions, in December Maryam was finally
deemed ready to return home to Kuwait. Marie
Esposito, RN, PNP, cared for her medical needs on that long
journey and provided specialized education to her new care providers.
Here, Esposito describes that experience.
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| Marie
Esposito, RN, PNP, joins Maryam's family for a birthday celebration.
It is the child's first birthday at home in Kuwait. |
 hen
it came time for Maryam to go home, a pressing issue was who was going
to do the transport. A potential war in the Middle East was the major
complicating factor. The family wanted normalcy for Maryam and did
not want a transport team. They wanted her to go on a regular plane
with assistance from trained medical staff: a nurse and a doctor.
The family felt very strongly that the person to go should be someone
who knew Maryam well, and Rusty
Jennings, MD, Maryam’s surgeon, agreed that it was important
that someone from Children’s demonstrate Maryam’s care
to her doctors and answer their questions. With support from my
supervisors, I volunteered, trusting that a war wouldn’t materialize
before February. It took 18 months of intensive care to get Maryam
well enough to go home, and we wanted to make every effort to ensure
her safety and continued well being.
Unfortunately, no Children’s doctor could make the trip with
me. The Kuwaiti Embassy ended up sending a doctor to assist with
the flight. Arranging the transport was enormously difficult, and
it took six months and the efforts of countless staff and employees
to make it work. But the pieces fell into place and Maryam was discharged
in early December. I joined Maryam’s family for the long flight
to Kuwait. Total travel
time was about 17 hours of flying and 15 hours of other transport
time, and we all stayed awake the entire time.
I stayed with the family in Kuwait until December 15, and while
I was there I met with Maryam’s new doctor, her new home nurse,
the head of the pharmacy, and the staff at the hospital where Maryam
would be cared for.
Maryam celebrated her third birthday while I was there. She had
been hospitalized for most of her life and had never been home.
It was quite a celebration, and although Maryam probably would have
preferred less noise, she loved being with her family. Maryam had
just learned to walk a month before she got home, and she adapted
well to the large corridors that she could run down with her walker.
While I was there the family
and extended family were extremely nice—they welcomed me and
treated me like a member of the family. They showed me around Kuwait
City and shared their traditions with me. They told me, “We
want Americans to see that we are good people.” Despite the
tense situation in the Middle East, I never felt in danger when
I was there.
I don’t think that Maryam would have made it home without
the coordinated efforts of a great many doctors, nurses and other
staff. Dr. Jennings and I made a follow-up telephone call a couple
of weeks ago, and the family was doing great. I pray for Maryam’s
continued safety in Kuwait.—ME
This team did an extrodinary effort in coordinating all of Maryam's
care over 18 months in order to get her well enough to travel back
to Kuwait safely:
Russell Jennings, MD, General Surgeon
Roger Nuss, MD, Otolaryngologist
Andrew Colin, MD, Pulmonalogist
Alison Knauth, MD, Cardiologist
Ann Marchant, RN, Patient Care Coordinator
Mary Horn RNC, Respiratory Specialist
Kelly Connelly, RN (Hotel Recovery, Home Care)
Aimee Lyons, RN, MSN, CCRN, Transport Coordinator
Staff nurses Andrea Rosen, RN; Jill Moloney, RN; Jody Dan, RN; Claire
Bruynell, RN; Bonnie Muise, RN; Carol Pacitto, RN; Judy Mahoney,
RN, Clinical Coordinator 8W
Herminia Shermont, RN, MS director Nursing/Patient Services Surgical
Programs
Robert Shamberger, MD, acting chief of Surgery
Monica Klieman, MD, and the entire staff of P5
Treza Saad, International Office
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