Sheri Bothell, a child life specialist, is there for Matthew whenever he goes in for an operation.
Intermountain Healthcare aims to help people live the healthiest lives possible. When it comes to Matthew Montano, a 12-year-old boy who regularly sees more than 20 doctors, that’s a little more challenging than it is with most people. For example, recently Intermountain teamed up with Shriner’s Hospital to perform multiple procedures for the boy in an all-day effort that combined the efforts of seven disciplines and took seven months to plan.
Matthew has spent his life fighting Hunter Syndrome, a rare degenerative and terminal genetic condition that makes life get more and more difficult for him as he ages. He spends from six to 10 hours in the hospital every week getting the enzyme replacement infusions he needs to slow down the disease. Boys with Hunter Syndrome eventually lose their ability to talk, walk, eat, and breathe on their own until the body shuts down.
Jenna Zito, a surgery coordinator at Shriners Hospital, worked for seven months to set up a series of procedures for Matthew.
Amber is a relentless advocate for her son and does all she can to give him the best quality of life possible. It’s not easy. But she has help. She’s put together a team of more than 20 medical professionals who work together to do all they can to help Matthew.
“Yes, I’m Matthew’s specialist in all things,” Amber says. She says she’s developed plenty of Matthew-specific expertise as she’s orchestrated his complex care since he was an infant.
Recently Matthew needed to be sedated so a surgeon from Shriner’s Hospital could do some needed surgery on his knees. Matthew has complicated airways and lung issues that put him at high risk if he’s sedated. Because of the complexities of this procedure, coupled with Matthew’s airway challenges, the surgeon planned to do the work at Primary Children’s Hospital where she has operating privileges.
Matthew’s surgeon isn’t the only person who wanted to do something for Matthew that would require him to be sedated. Amber had been carefully keeping track of every procedure that had been proposed for Matthew by his doctors and when the knee surgery was needed, she was ready. If Matthew was going to be put under, she wanted to make the most of it.
Dorothy Evans, is the Surgical Services director at Primary Children's Hospital who worked to Matthew's marathon procedure day a success.
In addition to the knee surgery, physicians needed to remove a cyst from Matthew’s head, give him some immunizations, perform a sleep endoscopy, do an MRI of his brain and spine, and do a sedated echocardiogram. They also wanted to check his ear tubes, perform an eye exam, clean some teeth, fill some cavities, and take care of some tooth extractions.
Jenna Zito, the surgery coordinator at Shriners, helped work out the logistics of bringing all the experts together for Matthew’s one-day surgery and procedure marathon. Jenna says the needs of seven different disciplines had to be met to do all the procedures on one day.
“Jenna worked at this for seven months,” Amber says. “She spent hours making phone calls, sending and answering emails, and she spoke to countless people. She’s the one who made this all happen really.”
Amber says she doesn’t know how Jenna coordinated all that work.
“I owe her so many fruit baskets,” Amber says. “I essentially gave her the names of the doctors and what needed to be done. I am shocked. I can’t imagine the coordination it took to do all of that.”
A lot of that coordination happened thanks to the work of Dorothy Evans and the rest of her team. Dorothy is the Surgical Services director at Primary Children’s.
“There are multiple disciplinaries who are involved in coordinating surgical procedures for any given patient, including those at the clinics, the physicians, the OR schedulers, management, caregivers, and central processing that assists in determining what type of diagnostic tests, supplies, and equipment are needed,” Dorothy says. “They all have to collaborate with one another in the Same Day Surgery/Post Anesthesia Care Unit, Operating Room, and in Central Processing to make it successful. It’s a large united team.”
“This is the perfect example of Primary Children’s and Shriners working together to optimize the care of a child with complex health care needs,” Jenna says.
Dorothy says they often coordinate multiple medical procedures that have to play out in a single visit for a patient, but they look at each patient as important and bring together everything that’s necessary for them.
“It’s similar to multiple instruments in an orchestra, playing together creating beautiful melody,” she says. “There are a lot of moving parts and pieces of a puzzle, when put together it exhibits extraordinary care. We truly care, and as we say at Primary Children’s, ‘We keep the child first and always’—especially when they may be high risk and there are medical complexities involved—we want to do everything possible to make sure each patient has the best outcome.”
Another important person in the orchestra for Matthew is Sheri Bothell, a child life specialist at Primary Children’s Hospital, who says her role is to be Matthew’s “safe person.” She’s helped him through many operations and procedures, and she was with him just before his nine-hour surgery marathon.
Sheri says Matthew did get a little agitated because there were so many people in the room, and she’s glad she was there to help him stay calm.
“I just talked with a smooth voice, rubbed his head, and did things I know are comforting to him,” she says. “It was just phenomenal that so many would be willing to work together to help this one young man.”
Amber says Matthew has the comprehension level of about an 18-month-old to two-year-old but he apparently understands one thing quite clearly. He wants Sheri around when he visits the hospital.
“For as long as I can remember Sheri and Matthew have had this bond,” Amber says. “She’s become so much more than just a child-life specialist. Ever since she started working with him, Sheri has never, ever missed a surgery. Once she came in at six in the morning on her day off to be with Matthew.”
Amber says while she’s working with the doctors and doing all the paperwork, Sheri is with Matthew helping others understand his needs.
“He’s very particular about how he likes things, about how he wants to be touched, and approached and things like that,” Amber says. “So, Sheri stays with him the whole time so when nurses come in to do something she can say, ‘He likes you to be on this side,’ and things like that. She makes the experience better for him.”
Jenna says she was “holding her breath” in the final hours before Matthew’s surgery because she knew many things could derail everything and send it all back to the drawing board. It finally did all come together and soon all Amber could do was wait as they took Matthew away.
“It was totally terrifying,” she says of the hours of waiting while her son was in surgery. “It’s a lot of just trying to distract yourself and a lot of just praying to the universe.”
Amber says Matthew was a little slower to recover than usual after the procedures, but he’s gotten better. That doesn’t mean his days ahead will be smooth sailing.
She says she’s grateful for the dozens of healthcare professionals from Intermountain and Shriners who are helping Matthew face his deadly foe, Hunter Syndrome.