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With a Bright Spirit, Kali Overcomes Obstacles

OLYMPUS DIGITAL CAMERAWhen we first introduced Kali in 2010, she was a vibrant 4 year old who had gone through a lot in her short life.

Born at just 24 weeks after her mom, Janice’s, water broke earlier than expected, Kali’s lungs weren’t developing, and her who body was overcompensating. Eventually, they were given two options – go to Texas to receive a lung transplant, or take her home on hospice until she passed away.

Her family chose Texas.

OLYMPUS DIGITAL CAMERABy the time Kali’s transplant was scheduled, she was 8 months old and had a body that was failing, with only hours left to live. The surgery came just in time – before it was even complete, her color was returning and after months of recovery, it was time to go where she belonged – home.

“We finally got to bring her home at about a year of age,” remembers Janice. “Our doctors and the home discharge nurse had gotten in contact with PHS, and worked with them down to having our respiratory therapist meeting us at the airport with the equipment we would need.”

Supporting A New Set of Lungs

KaliSince their first day home, Pediatric Home Service has been active in her care. For the first years of her life, Kali was extremely complex and relied on a trach as well as a number of supplies from oxygen and suction to heat/humidity, and other equipment related to her trach. In 2010, while she had been successfully weaned off the majority of her equipment, Kali still received regular visits from her clinical specialist, respiratory therapist, and dietitian to ensure everything was functioning properly and she was doing well.

Today, at 8 years old, Kali continues to receive check ins from her PHS clinical specialist and dietitian on a less frequent basis, and will always rely on medical supplies to some extent.

“PHS continues to play a very important role in Kali’s life,” says Janice.

Facing Challenges with Positivity

photo (57)Kali’s biggest medical challenge recently has been battling her ulcerative colitis that led to hospitalizations. However, after her doctors worked collaboratively, she has been receiving new infusions which have helped her to grow and feel better. Keeping Kali healthy and free of any viruses is a constant effort, due to her increased susceptibility from a suppressed immune system.

“Kali is able to take whatever is thrown at her,” says Janice. “She deals with so much in her life and yet she almost always has such a positive and upbeat personality. She is able to make anyone laugh or smile. Kali has been able to figure it all out – in her own time!”

A Focus on What’s Important

photo (58)These days, Kali has very important things on her mind – getting to know all of her new classmates (she just started second grade) and her upcoming Halloween costume (a Dalmatian). The costume comes as no surprise, considering her love of anything dogs and puppies.

“She will only play with puppies, will only read puppy books, and insists on having puppies on her clothes!” laughs mom.

But some of the best moments Janice has with Kali are when she does tasks independently, like packing her backpack – just another reminder of how far she has come, and how strong she truly is. There is no doubt Kali will keep lighting up rooms wherever she goes!

Originally published: October 27, 2014