Stories about: Pediatric Transplant Center

Collaborating with parents to improve patient care: lessons from a cardiac sedation nurse

collaborating with parents for pediatric health care

Anyone who’s a regular at a coffee shop can relate to this scene: you walk in, and the barista behind the counter notices you.  She waves, says your name, and you wave back.  By the time you get to the cash register, she’s already handing you your order — just the way you like it.

If your local coffee shop can prepare for your specific preferences, why can’t your health care team?

Often, the kinds of information not typically captured in a medical record are crucial to a patient’s experience. For example, if a child sucks his right thumb, his mother may tell the sedation nurse try to inserting the IV in his left arm first.  If a baby girl isn’t calmed by music but is mesmerized by a spinning toy, her father may want that toy in the room whenever she’s having an echocardiogram, so she sits still and the images are easier to interpret.

“Patients with chronic conditions return quite frequently to the same clinic for follow-up care and tests, and they shouldn’t have to repeat the same information each time,” says Brenda Brawn, RN, BSN, CCRN. “It’s not extraneous information; it can and should be incorporated into their plan of care.”

Brawn has been piloting a way to address this need in her work as a cardiac sedation nurse caring for pediatric heart transplant patients.

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A liver transplant surgeon who wants to avoid liver transplants

Khashayar Vakili Vector liver transplant metabolic diseaseIn the clinical world, Boston Children’s Hospital surgeon Khashayar Vakili, MD, specializes in liver, kidney and intestinal transplant surgeries, while in the lab he is doing work that could help some patients avoid a transplant altogether.

Among other things, Vakili is exploring autologous hepatocyte transplantation for metabolic disorders, but with a twist. He and stem cell biologist Fernando Camargo, PhD, want to find out whether it is possible to correct enzyme deficiencies in a patient’s own hepatocytes and transplant them back into the liver.

Learn more about Vakili’s work in metabolic liver diseases and hepatocellular carcinoma on Vector.

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