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Patient empowered by small steps; Gives team, family members hope

IU Health University Hospital

Patient empowered by small steps; Gives team, family members hope

He’s 24 and has been in the hospital for months - part of that time spent in a coma. Now, Daniel Preuss is communicating in ways that at one time seemed impossible.

By IU Health Senior Journalist, TJ Banes, tfender1@iuhealth.org

It’s been said that, “Music is a language that doesn’t speak in particular words. It speaks in emotions.” On a recent Friday, in a room at IU Health University Hospital’s Progressive Care Unit there was both music and a whole lot of emotion. For many in the room, it was nothing short of a miracle.

Daniel Preuss came to IU Health to be treated for lymphoma. Days turned into months. He was in a coma and intubated. As he began to attempt to communicate with his caregivers, there were challenges - not only with his speech but with his sight and hearing. It was difficult for him to verbalize his needs and equally difficult for team members to tell him about his condition and care.

After lots of observation and consultations physical therapists, nurses, occupational and speech therapists, collaborated on a plan. They learned that Preuss had both hearing and sight impairments that occurred after he came to the hospital for treatment.

At first they thought the cause was from his disease impacting his central nervous system. Then they thought it may have been caused by his chemotherapy regime. Because the acute loss was so new, Preuss did not know Braille. Team members Elizabeth Dimick, an occupational therapist, Jamie Pulliza, manager of adult speech language pathology, Stephanie Roberts, speech pathologist, Dr. Laura Prince, who specializes in physical medicine and rehabilitation, Christa Kaeser, physical therapist, Megan O’Brien, speech pathologist, and nurse Karlee Guerrero began experimenting with ways to communicate with Preuss. They also consulted with speech language pathology colleagues who specialize in neurologic deficits, Andrea Schaeff and Jill Stewart.

They started with hand squeezes - one squeeze meant, “Yes,” two squeezes meant, “No.” As Preuss’ condition began to improve he showed determination to communicate in full sentences. They wrote letters on his palm but soon learned they needed to “write” faster to keep up with his questions. They eventually began bringing a letter board to Preuss’ room where they could trace the shapes with is finger.

He adapted quickly and began asking more and more questions. His confidence increased as he began to recognize some of his team members by their touch.

Team members say he developed a special trust with Guerrero and asked for her when she wasn't in the room. The two developed a special handshake so Preuss knew it was his nurse when she walked in the room.

“I have put my heart and soul into him for the last month,” said Guerrero, who has been with IU Health for two years. Close to her patient’s age, Guerrero said it was important to her to make time to hang out with Preuss and get to know him. They talked about things outside the hospital. She learned he is the father to four children, one is named after his favorite car, a 1969 “Chevelle;” he proposed to his fiancé while he was in the hospital; he works as a mechanic and is a percussionist who loves rock and country music.

That interest in music added another layer to Pruess’ healing recently.

IU Health music therapist Emily Caudill began working with Preuss first to assess what he could feel and what he could hear. Using an instrument called a “Pentatonic Bass Metallophone,” similar to an xylophone, Caudill placed a mallet in Preuess’ right hand. She then guided him hand-over-hand as he struck the notes with minimal assistance.

Preuss’ mother witnessed the initial music session and noticed a change in Preuess’ expression and emotion. “He seemed to relax and smiled as he realized he was recognizing the sounds of the music,” said Caudill. Preuss had at times reported a ringing in his ear. Caudill, who was treated with ototoxic chemotherapy for ovarian cancer in 2012, also experiences ringing in her ears. She knew to watch for signs of agitation to ensure the music did not exacerbate the ringing.

But this was different.

“He verbalized a response after playing each note and reported hearing every single note of the C major scale,” said Caudill. “My personal experience is that the brain can sometimes compensate for hearing loss by producing high-frequency ringing in the ear. This is called tinnitus,” said Caudill. When she learned Preuss was a percussionist, Caudill chose instruments that might be familiar to him. One of those instruments was a “cabasa.” When she spelled the word, Preuss nodded and acknowledged that he understood.

Music therapy is part of IU Health’s CompleteLife Program that attends to the whole person - mind, body, and soul. In addition to music, patients can receive complimentary, yoga, art, and massage therapy.

When Caudill realized that Preuss did have some degree of residual hearing she said one of the goals was to use the sounds and instruments to promote a sense of empowerment and autonomy in a situation where he had limited control over what was happening to his body.

As the music therapy continued, Caudill played a series of notes and Preuss accurately replicated the series. As his inflection changed, Preuss indicated that he could hear the low frequency sounds. In all, Caudill said Preuss responded to three of five bass notes and all eight notes of the C major scale, beginning with middle C.

When his fingers were traced on the letters to ask how he felt. He responded: “Alright.” Then he smiled and eagerly pursued the music therapy.

It wasn’t just Preuss’ facial expressions that changed during the session. The room was filled with his caregivers. As Preuss prepared for discharge to rehabilitation, the team planned co-treatment with music, physical and occupational therapy.

Caudill provided opportunities for Preuss to continue playing the instrument as he worked toward his physical therapy goals - sitting and then standing. Physical Therapist Sydney Rusboldt was joined by nursing student, Maria Escobar, along with occupational therapist Dimick, and nurse Guerrero as they carefully repositioned Preuss. The team approach was to include the music to help him relax, manage his pain, and anxiety.

There was cheering. There were tears.

“I see a lot of cancer patients but I don’t see a lot like Daniel,” said Guerrero. “He is one of the most motivated people I know. The first thing he asks every morning is, ‘when is therapy?’”

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Laura A. Prince, MD

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