There’s a well-known saying, “Home is where the heart is.”
For the Lara family of the Bronx a big piece of their heart was at Blythedale Children’s Hospital. That’s where Ian, their nine-month-old son, has been a patient for more than three months.
Born last October, at 33-weeks gestation, Ian was treated at various hospitals before his admission to Blythedale in April. Prior to admission, Ian was diagnosed with centronuclear myopathy, a genetic condition that causes muscle weakness. In Ian’s case, the disease is so severe, that he suffers from low muscle tone throughout his body and other complications. This requires round-the-clock feeding assistance through a gastronomy tube, plus a trach and ventilator to provide respiratory support. In addition, intensive physical, speech and occupational therapies were all required.
“On admission, Ian presented as a very fragile baby on a ventilator, with very minimal movement,” said Jean Marie Florkowski, Senior Occupational Therapist at Blythedale. “In the beginning, our therapeutic approach was getting Ian to accept some positional changes while maintaining his vital signs and keeping him medically stable.”
Over the course of his admission, Ian began to make substantial developmental gains and build important muscle strength that even allowed him to smile, a once elusive reflex. This simple act – signaling his happiness - was a major moment for both his therapists and parents.
Last month, Ian’s clinical team decided he was ready to be discharged home – a home he’s never seen due to his hospital stays – but one where his parents and siblings were ready to welcome him with open, loving arms.
Just like Ian, his parents have also been learning new skills over the past few months. As part of the patient-family education program at Blythedale, caregivers are taught a multi-disciplinary approach to caring for their medically fragile child. It is tailored to the patient and their family, from admission to discharge.
“We know Blythedale is an amazing place, but we also know that there is no better place than home for a child.”
“Every parent needs to have the skills and confidence to handle any situation that may arise,” said Arleen Ott, Nursing Director for the Infant & Toddler Unit at Blythedale Children’s Hospital. “In Ian’s case, something as simple as a blocked trach can potentially become a life-threatening situation.”
Through this unique program, Ian’s parents spent hours of required training on tracheostomy and gastrostomy care, preparing and administering his medications through the gastrostomy tube, and learning proper suctioning techniques. The new techniques are then practiced on life-like responsive mannequins in the Hospital’s on-site simulation lab before the parents graduate to assisting with Ian’s complex care. And, since Ian is ventilator dependent, learning about that critical breathing system is of the utmost importance.
“I’m training the family how to go home,” said Keith Llewellyn, Assistant Director of Respiratory Therapy. “The family has to learn how to manipulate the ventilator, how to keep it going, address alarms and take care of their child.”
After completing the complex training regimen last month, Ian’s parents returned to Blythedale Children’s Hospital with his two older brothers. The day they had been dreaming of had finally arrived. Ian was coming home.
Smiling from ear to ear, Ian’s father thanked Blythedale staff for their unwavering support. “They are part of our family,” Eddy Lara said. “I’m really, really thankful for Blythedale because they made me feel more confident and I know my son is in good hands.”
Sentiments like these were echoed by Ian’s mom, Candy, who said learning how to handle her son’s tracheotomy was one of her biggest challenges. “I was scared because it was something new for me,” she said. “But I started learning how to handle the situation, and now for me it’s very easy.” It was not only Blythedale’s patient education program that Candy praised but also Ian’s ongoing therapies that changed him for the better. “When he came here he didn’t move at all and he didn’t smile,” she said. “Blythedale helped him improve his movement and when you talk to him now, he smiles. He’s happy.”
As an alert and stronger Ian left Blythedale Children’s Hospital, he was surrounded by his grateful family. As they prepared to go home, Ian’s father expressed optimism over the next phase of his youngest son’s life. “My hope, my wife’s hope, my family’s hope for Ian… we think he will be better in the future. He needs a little love from the family, and that’s the most important part.”