Being Brian Again
Brian Marrero may not be able to talk, but his face and body speak volumes. Sitting in the lunch room at Good Shepherd’s inpatient pediatric unit in Bethlehem, Brian, who is non-verbal, goes from being quietly enchanted to enthusiastically bouncing up and down in his wheelchair as his 96-year-old grandfather plays the guitar while Brian’s father sings a Spanish ballad.
The impromptu concert by Brian’s musical family is not the first they have given at the Good Shepherd Rehabilitation Hospital Emily Howatt Pliskatt Pediatric Unit, but it will be one of the last. Brian, who has autism and a seizure disorder, will soon be going home to Middletown, leaving far different than when he arrived. It is cause for celebration, and Brian’s father Luis and step-mother Gina Sanchez have brought a feast of Puerto Rican food to show their gratitude to the staff.
“I have a vivid picture of him the day he came,” says Jamie Zanelli, director of clinical operations at the pediatric unit, recalling the young man who arrived weak and lethargic after 47 days in the intensive care unit (ICU) of a Harrisburg hospital. “If you told me this is what he would be like, I never would have believed it in a million years.”
Last September, Brian, then 20 years old, suddenly became ill. He had a high fever and began aspirating his food and vomiting. Brian was rushed to the emergency room. He was diagnosed with high blood pressure and pneumonia in his right lung. Brian was admitted to the ICU where he had a tracheostomy and was put on a ventilator to help him breathe. Brian also had a feeding tube inserted through his nose.
Brian was sedated for much of his hospital stay. Luis spent every moment by his son’s side. At one point, Brian’s tongue swelled to about 10 times its normal size, blocking his airway. His condition grew so critical and his prognosis was so poor doctors suggested it might be merciful if Brian passed away. But remembering the lively son who loved music, watching television, playing games on his iPad, and laughing, Luis wouldn’t hear of it. Neither apparently would Brian. Brian not only survived, he was ready for the next step in his recovery. Even though he would be 95 miles from home, Good Shepherd was the best place for Brian to get the rehabilitation therapy he needed.
Brian was admitted to Good Shepherd on November 16, 2017. His lengthy hospital stay had taken its toll. Brian just lay in bed and looked at people. He was so weak he couldn’t sit up on his own. He was dependent on high-flow respiratory support and still had a feeding tube. Brian needed physical, occupational, speech, recreational, and respiratory therapy before he could go home. “When Brian was brought to Good Shepherd his family was devastated to see the condition he was in,” says Jamie Ciabattari, physical therapist. “”He needed the help of two people just to change clothes. He had lost mobility in his arm and neck, and he was very weak and lethargic with very little eye contact.”
The first goal, says Jamie, was getting Brian out of bed and into an activity chair similar to the one he had been using at home. The speech therapists also wanted to re-engage Brian with his iPad which was a big part of his daily life. “Everyone wanted to get him back to being Brian,” says Jamie.
Brian’s love of music, especially the guitar, became a motivational tool. His talented family brought their instruments and played and sang when they visited. Brian’s grandfather, Angel Marrero, performed many of his original faith songs. Brian loved stroking the strings on his grandfather’s guitar, his face lighting up with joy and laughter. A guitar was kept in Brian’s room for continued inspiration.
With the therapy team’s expertise it didn’t take long for the Brian his family knew and loved to emerge. Within two weeks Brian was laughing at his favorite television shows and using his iPad. And he was ready to start exploring the unit. But Brian’s movement was limited to a few steps by the length of the respiratory support tubing he still needed to help breathe. Eventually Brian was able to use a portable oxygen tank giving him more freedom. Then, it was off to the races.
“He wanted to move more,” says Jamie. “When you walked with him he would run and gallop down the hallways. One of the biggest challenges was getting him to sit back down in his chair!”
As Brian progressed his need to socialize propelled him even further. “He’d visit the day room and the nurses’ desk to see what was going on,” says Jamie. “It was a driving point for him and motivated progress with his therapy.”
On Monday, February 5, 2018 Brian went home to continue with outpatient therapy. He still had a feeding tube and a trach but no longer needed supplemental oxygen. Perhaps best of all, Brian celebrated his 21st birthday on February 13 surrounded by loved ones. “We had faith in God to bring him through,” says Luis. “The whole (Good Shepherd) team is beautiful. Brian reached his goals thanks to you. You guys are always going to be his family.”
Watch the video “Brian’s Serenade."