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02.14.03

My long journey to the Middle East
 

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.

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.
  Marie Esposito, RN, PNP, joins Maryam's family for a birthday celebration. It is the child's first birthday at home in Kuwait.

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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