Last updated 8 days ago
“I’ve never experienced a makeover like this before,” says Kelly, Chapter Director at Special Spaces Chicagoland, a non-profit that creates dream bedrooms for children with life-threatening illnesses.
Special Spaces approached Sara, age 10, and her parents earlier this year to transform Sara’s bedroom into a dream world. But Sara’s friends, nurses, and community had something even better in mind that would infuse joy and meaning into Sara’s entire home.
Sara’s parents, Rei and Dan, and teenage brother, Josh, have been fighting for Sara since the day she was born with a rare chromosomal abnormality called Trisomy 16. Ten years later, Sara now requires dependence on mechanical ventilation and 24/7 skilled hourly home nursing care. (Read Sara’s story here.)
Support rolled in from every direction to make Sara’s dream come true. More than 30 volunteers (including some of Sara’s nurses!) donated their time to help make the redesign happen in one whirlwind of a day. Corporate and community sponsors exceeded Special Spaces fundraising goal, making the five-room redesign possible. Included in the redesign were Sara and Josh’s rooms, plus the bathroom, guest bedroom, and living room.
Before the makeover, the guest room was serving as a medical supply room for Sara’s extra supplies, wheelchair, and stander. Today, it’s a place for family and friends to stay.
Josh’s computer-themed room redesign was an acknowledgment of his significant role in Sara’s life. Due to the complexity of Sara’s diagnosis and care, Josh isn’t always in the spotlight.
When asked about his favorite part of his new room, Josh looks around with huge eyes and says, “Everything!!!”
Sara’s bedroom makeover was the most complex. The team of designers needed to find a way to transform the family’s living room into a functional, safe, and dream-like space for Sara.
The redesigned space includes a hot pink sectional, new organizational system for medical supplies, and a teal desk for her nurses to chart.
Leading Sara’s bedroom redesign were the creators tokidoki, a lifestyle brand featuring Japanese anime characters and designs. Five employees from tokidoki, including the co-founder and chief operating officer, traveled from Los Angeles, California to create Sara’s special space, which included custom lampshades and drawings, as well as scrub tops for Sara’s nurses.
The Big Reveal
The love and joy surrounding Sara and her family during the reveal is unmistakable.
Sara and her family were speechless as they walked through each room. Rei, who rarely shows emotion, was drawn to tears by the makeover and the impact it will have on her daughter’s life.
Laura, RN, a nurse who has cared for Sara for the past five years, was also overcome with emotion during the reveal.
“Thank you. Thank you so much,” was overheard by Sara’s family as they peeked into each room, admiring all of the finishing touches.
At the end of the reveal, Kelly brought the group of volunteers together again: “I’m so proud of what we accomplished today.”
[To see more photos from Sara's home makeover, go to our Facebook page.]
Last updated 15 days ago
Daniel, 21 months, is a dynamic, intelligent, and handsome little man. Born at 27 weeks weighing only 1 lb., 7 oz., Daniel spent the first 10 months of his life in the hospital. There, he was diagnosed with a heart defect and respiratory complications due to his prematurity. Daniel’s diagnoses required him to undergo open-heart surgery at 4 months, receive a tracheostomy, and be placed on mechanical ventilation.
“Daniel has come a long way,” his mom begins.
Next month marks Daniel’s first year home with Independence Plus’ skilled hourly home nursing care. With help from his parents and nurses, Daniel has already made significant progress—including successfully weaning off the ventilator in December.
Daniel the Explorer
Daniel has been walking for almost two months, and is busy exploring his new world. Living downtown Chicago, Daniel spends his days exploring the city with his parents and nurses—Millennium Park, Navy Pier, and the Lincoln Park Zoo. Daniel and his parents also go to Macy’s every Saturday.
His mom explains, “Daniel is fascinated by the balloon artist.”
Daniel spends most weekends outside, especially now that the weather is nice. He enjoys going to the park and waving hello to the people who pass by him.
In January, Daniel traveled to Los Angeles, California, to visit his grandmother. While in California, Daniel and his parents participated in his Dedication Ceremony, a Christian custom similar to a baptism, to celebrate his birth and make a commitment to God.
During our visit, Daniel plays a game where he identifies items in his apartment—his humidifier, smoke alarms, and light fixtures.
“Where is the humidifier, Daniel?” his mom asks. Daniel points to the humidifier.
From the delighted expression on Daniel’s face, you can tell he enjoys this game and the praise he receives when he points to the correct item. Daniel also enjoys reading time with his parents and nurses, playing with his yellow dump truck, and walking and running around his apartment.
Daniel was showing great progress during his physical therapy sessions at Ann & Robert Lurie Children’s Hospital of Chicago that the hospital chose to include him in their education materials for new parents.
He can be seen on the pages of the hospital’s tutorials about sitting, standing, loosening shoulders, and supported rotation for children who are on mechanical ventilation.
Daniel is well on his way, and we wish him continued success during his rehabilitation!
Last updated 29 days ago
Lauren, who turns nineteen next month, was given a very special gift last December. Two days after Christmas, Lauren received news that she was finally going home. It was her first day home in six years.
“We’re getting her home by the Grace of God,” says Lauren’s dad, David, as he shares the emotions of that extraordinary day.
Walking into Lauren’s new bedroom, visitors are greeted by The Twilight Saga movie posters, Luke Bryan music playing in the background, and Lauren’s big, beautiful smile. Lauren suffers from Spinal Muscular Atrophy (SMA), a neuromuscular disease that causes severe muscle weakness and requires her dependence on mechanical ventilation.
Lauren’s diagnosis has never stopped her from achieving her goals. An honor roll student, softball and basketball player, and chorus participant, Lauren is happy to finally be home.
“We were told Lauren wouldn’t live past three.” David continues, “Then, we were told she wouldn’t live much after seven.”
Lauren pipes into her father’s story: “I’m a fighter.”
Today, Lauren is still fighting. This time, she’s fighting to live at home, surrounded by her friends and family.
Lauren’s transition home includes 24/7 skilled nursing care. Kristi, LPN, is one of Lauren’s full-time nurses who welcomed her home last December.
“We all love working with Lauren,” Kristi reveals. “Lauren’s whole team is invested in keeping her home.”
Make ‘em Laugh
Lauren proves that laughter truly is the best medicine.
“Lauren and I want nurses to enjoy being here,” David says. “We want them to laugh.”
Lauren banters back and forth with her dad and Kristi during the visit. Laughter is at the heart of Lauren’s relationships.
Overhearing her dad say that she may need a new dietician, Lauren responds: “Dad, you’re the one who needs a dietician!” We all burst out in laughter.
Leak Speech and Communication
Lauren has a unique, little voice that she is able to vocalize using leak speech. This harmonious whisper is one of the many ways Lauren communicates. Lauren also expresses herself by moving her eyebrows up and down for “yes” and her eyes side to side for “NO!”
It’s easy to talk with Lauren. It’s one of the many reasons people feel close to her. Lauren’s dad even calls her a “social butterfly.”
As a member of Generation Z, often described as “millennials,” Lauren excels online. She uses email, texting, Facebook, and Skype to communicate daily. Lauren is able to do all of these things using an eye-tracking communication device.
Lauren’s future is bright. She is grateful to everyone who has touched her life, and wants to do the same for others. Lauren plans to attend college this fall where she will double major in social work and music. Knowing Lauren, she’s going to be successful in whatever she does.
Last updated 1 month ago
Blake Weber, Scheduling and Recruiting Manager, is leaving Independence Plus to pursue his dream of opening a restaurant in California. In honor of Healthcare Recruiter Day and the departure of our friend and colleague, we sat down with Blake to discuss what he learned in his role and how Scheduling and Recruiting benefits our patients, families, and nurses.
Graduating from Northwestern University with a degree in Psychology, Blake came to us fresh out of college and ready to put his stamp on the world. Often quiet and reserved (until you get to know him!), Blake is analytical, innovative, and a great listener. These skills have been hugely beneficial to Independence Plus over the last three and a half years, and we believe that Blake has accomplished what he set out to do—make a real difference. Today is Blake’s last day with Independence Plus.
Q: What skills did you develop that surprised you?
A: I learned how to read people and build relationships. Every time I spoke with a nurse, it was a chance to get to know them a little bit better. I learned that everyone is in this line of work for a different reason, whether it’s an interest in providing 1-on-1 patient care or working with our ventilator-dependent patient population.
Q: What did you learn about yourself while working here?
A: I never lost sight of what truly mattered here, which is patient care and safety. Sometimes, that meant I had to make tough decisions, but it ensured that the patient was going to be well cared for. Because I strongly believed in what we are doing, it became easier to do the right thing.
Q: What are you most proud of?
A: I feel like when I leave, the Scheduling and Recruiting Department will be in a great place. I have spent a lot of my time here trying to come up with “big ideas.” Often, these ideas alone are not the most realistic, but they spurred conversations that lead to many smaller changes. For example, with a lot of feedback and hard work from a team of people, we developed the Home Nursing Residency Program from the ground up. I honestly believe this program has already been a huge benefit to our patients, our families, the nurses who participate, and in particular our scheduling department.
Q: What did our patients and families teach you?
A: Life is hard, and we should live as much as we can while we can. I have seen patients and families of all types. Consistently, these folks struggle with daily living and things that many people take for granted. I have real respect for our families and patients and I hope that I’ll be able to show the fortitude that they have shown when my life presents real challenges and I need to find their kind of strength.
Q: What will you miss the most?
A: I will miss the people. The hardest part about leaving is walking away from the people who have honestly become like a family to me. We’ve shared meals, stories, and good times, and those memories will last a lifetime.
Q: In your opinion, what makes Independence Plus different from other home care agencies?
A: No other agency has a Tamara Müller, our Founder and CEO. She is the rock of this company and is willing to do everything in her power to ensure that all of our patients and families have the best care possible.
Q: What skills will you take with you and apply to your new business?
A: I’ve gained the ability to see with a long-term, broad vision that will be invaluable for running my own business. The ability to look farther down the road and think about how a decision will affect the future as much as the present is something I hope every scheduler gains in their time with Independence Plus.
Q: What would you like to share about your future?
A: I’ll be in north San Diego County, just a short walk away from the University of California – San Diego campus. If anyone is in the area, I’d love for you to stop by The Pita Pit and grab a pita for breakfast, lunch, or dinner. I’ll probably still charge you full price, though. ; )
Blake, we will miss you, your delicious cooking, and dry sense of humor. It has been a pleasure working with you.
Last updated 1 month ago
Andrew, 2, is one happy, healthy, and handsome young man! Today, we are overjoyed to announce Andrew’s graduation from our Home Nursing program. He has completed one tough journey and now he is ready for life without skilled home nursing care from Independence Plus. (Read more about Andrew’s journey here: Part I and Part II.)
This day is filled with many emotions as his full-time nursing staff and clinical team say their goodbyes and celebrate Andrew’s incredible progress. After great planning and preparation, Andrew underwent a planned (and successful!) decannulation earlier this month.
“We encouraged Andrew the whole way,” explains Lisa, RN, one of Andrew’s nurses who has worked with him for most of his life.
Andrew’s Planned Decannulation
Andrew learns fast. He wasn’t any different with his readiness to wean off the ventilator and ultimately, with his successful decannulation (removal of the tracheostomy tube).
Jennifer, Andrew’s mom, recalls when she first learned that Andrew would require a tracheostomy, “I thought a trach meant that Andrew wouldn’t be able to move and would lay in bed all day.” She continues, “Once Andrew was trached, he started smiling immediately. He was so happy.”
“If I ever had to do it again, I’d trach him much earlier,” Jennifer reveals.
Andrew’s stoma will most likely close on its own. Since decannulation, Andrew’s nurses keep the site clean and bandaged.
“He still breathes out of it,” says Jennifer. “But it’s closed a lot already.”
Andrew is on a roll. In August, Andrew begins preschool where he’ll go for a few hours every day. During a recent visit to his new school, Andrew showed off by recognizing his shapes, letters, and numbers. This young man is a real communicator!
Andrew participates in speech and feeding therapy to help him accomplish his next goal—learning how to talk and eat. He’s already doing tastes by mouth and his favorite thing to eat is his grandmother’s pasta e fagioli.
Jennifer and her husband are looking forward to resuming their annual trip to Florida later this summer. They haven’t been back since Andrew was born.
“We’re not sure what Andrew will think of the sand,” Jennifer smiles.
Most of all, Jennifer is excited to finally share this trip with her son. They are joining Andrew’s grandparents, aunts, uncles, and cousins for two weeks of relaxation.
Parting Advice for Other Parents?
Jennifer’s advice for other parents and families who require Skilled Home Nursing: “Set ground rules, but also be understanding and flexible.” She continues, “We found that if we didn’t over think nursing in our home, it started to feel normal.”
Andrew’s parents thought about only one thing—helping Andrew get better.
“And take all the help you can get.” Jennifer says as we’re leaving. “Don’t be ashamed.”
Andrew flashes us one of his big smiles as we wave goodbye. We smile, too. Andrew has his whole life ahead of him and we can’t wait to see what he accomplishes next!