Milestones deserve a celebration. At least that’s what Seattle Children’s Pediatric Advanced Care Team thought when 9-year-old Gabby Krueger, a longtime patient at Seattle Children’s, received some good news the week before Christmas. After 14 weeks in the hospital, doctors gave the family the green light to go home.
“We’ve been here a really long time,” said Kim Sistek, Gabby’s mother. “We were really excited to go home.”
The news came after Gabby showed improvement in motility. For three years, Gabby has needed assistance going to the bathroom. She’s needed to use enemas to pass stool on her own. Her parents were beginning to have conversations with doctors about what Gabby’s life would look like if she lost motility. Her outcome was looking bleak. But just a couple weeks ago, Gabby made an improvement.
“It happened out of nowhere,” said Sistek. “I literally started crying. It’s such a milestone, one worth celebrating. It gave us hope that she did indeed have motility in her gut and offered us some optimism amongst all our worry!”
To celebrate, PACT, threw a special party just for Gabby, a party with quite a unique theme. The celebration was adorned with chocolate cupcakes, Baby Ruths, Tootsie Rolls and brown balloons.
“The patients PACT works with at the hospital often have a life threatening illness. Part of our work with patients and families is to sprinkle a little joy into their days,” said Julie Arguez, PACT, lead consultant at Seattle Children’s. “Gabby’s body had just conquered a major hurdle and one the family worried was insurmountable. It felt like perfect timing to gather her team to celebrate the remarkable young woman that she is.”
The New Year for Gabby marks a fresh, more independent start, one away from hospital walls.
“It was a really fun day,” said Sistek. “I think she knew today was a good day. She really perked up seeing everyone she loves around her. Things are turning around. Her stomach is still not fully functioning, but things are going well.”
A long stay, a happy goodbye
When you’ve been a patient at Seattle Children’s for so long, you make a few friends. For Gabby and her parents, those friends have various titles – nurses, doctors, researchers, even a music therapist named David Knott.
For Gabby’s going home party and milestone celebration, Knott collaborated with Sistek to make a special song just for her that was sweetly sung to her by him and her care team.
Gabby has been a patient at Seattle Children’s since she was just three days old. Her journey at Seattle Children’s has been a long one. The family visits the hospital frequently, both for appointments and inpatient stays. Gabby suffers from seizures, respiratory illnesses and gastroenterological issues, among other issues. She sees more than 10 different specialists at the hospital, for a condition researchers at Seattle Children’s Research Institute are working to diagnose.
“It’s been an emotional journey,” said Sistek.
But what makes every stay at little easier, said the Sistek, is the “family” we’ve made here at Seattle Children’s. The hospital has truly become a “home away from home.”
A Special, Personalized Song
It goes a little something like this, set to the tune of “My Favorite Things” from “The Sound of Music:”
It’s favorites of Gabby’s, featured in a song
Some you might share, if you do sing along,
All kinds of music, some for fun, some to calm,
Here are a few of her favorite things.
Dill pickles and sorbet, mango Menchies, no dairy
Not mixed together, that sounds a little scary.
Dum dums and popsicles made from root beer,
These are the tastiest things I hold dear.
Minions and cousins, especially when near,
Bree wearing Seahawks, all dress up to cheer
With Nanna and Pops, we root for the Seahawks
These are some things that I care a lot(s).
When the seizure bites, when the needle stings
When I’m feeling scared,
I simply remember my mom’s very close
And then I don’t feel so bad.
See Gabby’s song sung to her in the video below.
The New Year is looking bright for Gabby. And although they’ll have to come back to Seattle Children’s for more appointments, they’re hopeful.
“Her future is in most ways something we have because of the care, love, dedication and commitment from the entire team we have behind us at Seattle Children’s,” said Sistek. “Thanks to them, whatever time we have left we know will be the best there is to offer.”
Resources:
- Music is medicine for kids – KING 5
- Seattle Children’s Hospital | Pediatric Advanced Care Team (PACT) – KOMO
