It’s always a special day for us when we can send an exceptional child back home to family and friends. In 2022, Naomi returned home to her grateful Mom, Brittany, Dad, Jacob, sister, Julianna, and brother, Lucas. It was and continues to be a long and arduous journey for little Naomi, but our sweet patient braves her way through.
At the tender age of six months, Naomi received a heart transplant; having suffered with a weakened heart and lungs that required a tracheostomy (a surgical opening that allows air to fill the lungs.) The trach required constant nursing care and the family made the difficult decision in March of 2020 to transfer Naomi to Exceptional Care for Children (ECC.)
Brittany was terrified by the move. In addition to all the worries caused by the separation, the advent of Covid meant that the family could not visit. However, she advised, the ECC staff did an amazing job of calling and video chatting to keep the family in the loop.
When Naomi first arrived at ECC, she hardly spoke or walked. At that time, she was able to stand with the help of a mobility device and she learned to move and communicate in her own way. By the time she left ECC in October of 2022, she walked unassisted and her speech improved greatly. Today, Naomi speaks in full sentences!
Brittany was surprised (and delighted) about just how much staffers cared about “these kiddos.” Several of Naomi’s nurses and therapists became like family, especially when her own family was unable to be there.
Without the support of ECC, Naomi would have had to remain in the hospital until the tracheotomy tube was permanently removed or if the family was able to obtain 24/7 nursing care. Even if either option was possible, Brittany said, “I do not think she would have received the level of therapy that she got while at ECC and she might not have made all the progress that she did!”
In preparation for Naomi’s journey home, the staff made sure that the family would be able to care for Naomi and they addressed all of the family’s questions and concerns. Brittany and Jacob were “100% comfortable” with the discharge plan.
Since Naomi returned home, Brittany said, ‘the only word I can use to describe the experience is ‘amazing.’ To have our entire family under one roof has been great!”
Naomi (right) at home with her big sister Julianna (left) and little brother Lucas (bottom).
She continued, (Naomi) “has been taken off several medications and was even taken off of all of her respiratory treatments. Most of her follow ups have been moved to once a year. She was also able to stop using her MAFO (ankle and foot) braces. Naomi has even begun to show interest in eating and drinking. Since being home she has been thriving and making amazing progress with her health and developmental status!”
Naomi still battles issues with her transplanted heart, but the family remains hopeful that she will continue to progress positively. Recently, Brittany, Jacob, Julianna, and Lucas were so proud to see Naomi graduate from pre- kindergarten. Onward to kindergarten!
Brittany has the same hopes and dreams for Naomi that every nurturing mother has for her child. “I want to see this girl continue to do all of the amazing things that I know she is destined for!”
The staff of ECC is thrilled that Naomi continues to thrive and, though we miss her sunny presence, we are so happy that she is reunited with her loving and supportive family.
Article by Autumn Majewski with Jill Salter