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Three Precious Years | Warm Memories Endure
Thriving at home as long as possible
Not the news they expected: A few months after her birth in May 2008, Emerson's parents were told their young daughter had six months to live. She defied those odds and lived more than three cherished years, much of it at home with her parents and younger brother.
Emerson seemed healthy when she was born, but at eight weeks, what her mother thought was a cold, turned out to be series of complications and congenital defects:
- DiGeorge Syndrome, which causes facial abnormalities and other heart and growth issues
- Tetralogy of Fellot, a heart condition in which the arteries are flip-flopped and blood flows the wrong direction
- heart disease
- pulmonary atresia, and a host of other conditions
Emerson spent 11 months in the hospital before her mother reached her limit and decided they needed to bring her home.
Welcoming Emerson home
PHS arrived at Emerson's home a few days before she did, equipping her parents and other caregivers with two t-bird vents, oxygen tanks, suction machines, a food pump, and the training and confidence to handle it all. And as soon as Emerson got home, planning began to get her off the ventilator.
"Without PHS we would have stayed in the hospital," said Heather, Emerson's mom. "But she wasn't giving up, so neither were we."
With the safe care plan from Emerson’s physician, PHS respiratory therapists, infusion therapists, pharmacists, and dietitians weaned Emerson from a whole host of medications and helped get her off the vent a little more each day. They supported her parents' wishes and taught them to become competent caregivers. They made it possible for Emerson to live at home, where she was most comfortable, rather than the hospital.
She lived how she wanted to live
Emerson spent most of her short time here exactly where she liked to be: with her familiy. They took her on walks, they went to the pool — she even went horseback riding. She did the things any average healthy kid does.
"We just want people to know that this is possible," Heather added. “We had three wonderful years with our little girl.”
Her proudest day
For one day in July 2011, Emerson was weaned off oxygen. As Heather wrote on Emerson’s Caring Bridge journal:
“Yesterday, she was weaned off of her oxygen. Yesterday was the first day since her diagnosis that she wasn’t on oxygen, which was her last step to becoming a normal little girl. The first time in 3 years... She made it. Only for one day, but she did it. We’re so proud of her.”
That night, complications compounded and Emerson passed away.
As Heather recorded: “With tears running down my face, I want to remember all that have been impacted by her inspiration. She is now in heaven running, talking, playing and not tied to any tubes.”