Five-year-old Teagan cannot walk, speak, eat or move.
She was diagnosed at age 3 with metachromatic leukodystrophy, a terminal genetic condition.
But Teagan “is a little warrior,” said her mother, Kelsey Donnelly.
The grief is deep for Kelsey and husband Shaun, but so is the joy, thanks to Teagan’s unflagging spirit and the invaluable support they have received during the past two years from Pikes Peak Hospice & Palliative Care, Kelsey said.
Thanks to the nonprofit organization, they’ve been able to treat the girl’s bouts of aspirational pneumonia from home to avoid COVID. Her family was also provided with a high-flow oxygen machine, which is not a common medical tool for homes. Teagan’s hospice team includes a physician, nurse and social worker. There is music therapy and physical massage.
The team helps monitor Teagan’s health, and a social worker visits the home weekly to provide a compassionate ear and see what is needed. “Sometimes we laugh, sometimes I cry,” Kelsey Donnelly said.
Teagan’s days are filled with much-loved stroller rides, painting pictures with mom guiding her hand, being read to, music and physical therapy. She likes visitors, following them with her eyes and listening intently. When she was a year old, the family got a German shepherd puppy. Teagan could talk then and named her Jelly. The two are bonded and the dog sits close, and Teagan is comforted, Donnelly said.
Donnelly said after her daughter was diagnosed at the hospital, a hospice team came to talk to her. She, like a lot of people, thought that hospice meant death was immediately at hand.
“I was terrified,” she recalled.
That is a common misunderstanding, said Laura Rosendo, executive director of the Pikes Peak Hospice Foundation. There is sometimes confusion as to exactly what hospice is. It doesn’t mean imminent death. Help can take place at home to improve quality of life for the patient and their family for the time left.
The hospice does have an inpatient unit for the most complex cases at Penrose Hospital, independent of St. Francis-Penrose Health Services.
There are other hospices locally, but Pikes Peak Hospice & Palliative Care is the only nonprofit organization, Rosendo noted. “Our mission is to serve quality care to everyone.” Most services are covered by Medicare, Medicaid, private insurance and also donors. Last year, they served more than 2,00 patients.
Thirty percent of their clients are veterans. The hospice partners with the national We Honor Veterans program and has the top rating for high-level holistic care.
It has a variety of support programs in and out of home for terminally ill patients and those who will be left behind. Home care is individualized and handled by teams that can include doctors, nurses and nurse assistants, as well as social workers, chaplains, and volunteers. Visits are made depending on need. .
Program offerings emphasize education and counseling for families, including children. There are 13 months of counseling available for families. Children’s Grief Camp is offered with the Cheyenne Mountain Zoo
The Patient Special Needs program helps families with rent, utilities, groceries and other needs. “It lessens some of the burden and makes the last phase of life more comfortable,” Rosendo said. One woman received a much-needed recliner, and another got an air conditioner.
Sentimental Journey provides experiences similar to the Make a Wish concept. The program was able to take one man, who had loved skiing, up to see the ski slopes once again with his family. A grandmother took a train ride to see autumn leaves and posed for photos with her family.
“It’s powerful to provide those kinds of experiences,” Rosendo said.
For more information visit pikespeakhospice.org.
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