On October 22, 2016, Matthew Malley of Farmingdale, NY, thought he had a virus. Because he was sick and believed he might be contagious, he was sleeping alone. His wife, Diane, was on the couch in their room and their two kids — Erin, 6, and Connor, 2, were asleep in their beds. Around 8:30 that night, Diane got up to go to the bathroom and she checked on her husband. If she hadn’t, he might not have survived the night. Her husband was having a seizure. She immediately dialed 911. He had three seizures that night.
After the ambulance arrived, there was chaos in the house as paramedics and EMTs worked to save his life. Mrs. Malley cites divine intervention for her waking in time to help her husband and also in the “blessing” that had her kids sleep through the crisis.
“When my children went to bed their father was there. When they woke,” she said, “he wasn’t." Mr. Malley had been taken by ambulance to St. Joseph’s Hospital, the closest hospital to their home. He was transferred shortly thereafter to North Shore University Hospital (NSUH).
What happens next is a story of resilience, kindness and faith. It is not a story that ends with Mr. Malley being cured and walking out of NSUH and back to the life he once knew. Much of that life has changed so there is no going back to what was. There is no traditional happy ending here (at least not yet) and there are no easy answers to what caused his illness. Instead, this is the story of a young family facing down a serious illness and surviving with the help of family, friends and a strong woman at the center of it all.
Hospital stay: 276 days and counting
It is near the end of July 2017 and Matthew Malley remains a patient at NSUH. He has been there since October. He has had brain surgery, bowel resection surgery, nine bouts of pneumonia and has been given the Last Rites, the Catholic sacrament of reconciliation for those near death, multiple times. He has lost considerable weight (more than 100 pounds). His condition has been marked by a series of setbacks and complications so that every time it seems like he might advance to rehabilitation and the next level of care, he has regressed.
As his wife said, “it has been 276 days.” They have spent almost a year in the hospital — almost a year removed from a life that Mrs. Malley said was spent with their children and a black lab. “We don’t like to sit still,” she said. “We’re outdoorsy people. We go on family walks. Sports play a big part in our life. We’re both teachers and high school coaches.” Mrs. Malley teaches at Syosset High School and her husband at Roosevelt High School. He is also the soccer coach at Roosevelt and baseball coach at Island Trees. They met at Kasey’s American Grill in Rockville Centre in 2002 and were married five years later: July 14, 2007 at St. Kilian’s Parish in Farmingdale.
“We are very family- and faith-oriented,” Mrs. Malley said. It is quite a family. “Matthew is one of seven. I am one of five. We have 25 nieces and nephews, a large group of friends and now our extended family at North Shore University Hospital.” That last sentence about the ‘hospital family’ could sound almost perfunctory except when you consider what comes next.
Emotional holidays: Not a dry eye in the house
Terri Nelson, RN, nurse manager, explains: “Mr. Malley has been the patient with us the longest. We’ve gone through every holiday and special occasion with him and his family. The whole unit has bonded with Matt, Diane and their kids, and we’ve become close. In late December, we turned Mr. Malley’s hospital room into a Christmas wonderland,” Ms. Nelson said. “We did the same for the kids’ birthdays and his wife’s birthday, all the holidays.” In the past year, the hospital staff and the Malleys have spent every holiday together.
Mrs. Malley said: “It was important to my kids and to me. Around Christmas they moved my husband to another room. They covered up the monitors with blankets and cloth so it wasn’t so scary for the kids; they moved the Christmas tree from the unit into his room. The kids and I wore our new Christmas pajamas. It's a family tradition we have. It was such an overwhelming kindness. The unit staff, Child Life and Patient and Family Centered Care made all the arrangements. There were presents…Matt wasn’t terribly interactive at that point but they got him out of bed, put a Santa hat and Christmas pajamas on him too, making him look as normal to my kids as possible. There wasn’t a dry eye in the house.”
As a teacher, Mrs. Malley understands the importance of decorating rooms and connecting to students and, in this case, her husband: “there’s a lot more going on other than making the body well, there’s the spirit and psyche. All things are connected.”
The hospital’s Patient and Family Centered Care (PFCC) department understands this too and worked with Mrs. Malley, the nurses on the unit and Child Life to help ease the Malleys’ stay during this difficult time in their lives. Part of what PFCC does is to help the staff so that they can provide high quality care to the patient and family. Nicole Benincasa, director of PFCC, spoke of the intricate connections of care that need to be in place for patient, family and staff to achieve the best possible outcomes.
“Diane is balancing being a mom of two small kids, visiting her husband who has an extended length of stay and has been so close to going to the next level of care on several occasions only to not be able to reach that milestone,” she said. “She has been making a lot of tough decisions. It has been a roller-coaster for her and her children. The staff who care for the Malleys have also been experiencing a wide range of emotions that need to be addressed so they can be at their best for the patient and family.”
She cited an initiative known as Team Lavender, a ‘holistic rapid response’ that supports staff with Reiki, deep breathing, active listening, talk therapy and other coping strategies that help to alleviate stress. Some of these skills, while used for the staff, were also employed to help Mr. and Mrs. Malley.
“Self-care is so important,” Ms. Benincasa explained. “You’re only as strong as you can treat your body with wellness. In the case of Mrs. Malley, we escalated care through the 1-888-321-DOCS number to connect her to resources to talk to a counselor so she could remain strong for her family.”
Ms. Benincasa said that while the combined efforts of PFCC, nursing and Child Life have created many special moments for the family, none was more special than the event that was held on July 14, 2017.
A renewal of vows
“I remember joking with Matt: so what do you want to do for our 10-year anniversary?” Mrs. Malley said. “We had gone to Aruba on our honeymoon and had always planned to go back to celebrate 10 years. Matt got really down: `What can we do?’ he asked. He sounded defeated. I brainstormed with Terri Nelson, Jenna Vanacore and Maureen Crimmins and we decided to renew our vows. Our parents came. The priest who married us came. Doctors and staff who from many of departments who weren’t working came. And our kids served as the flower girl and ring bearer. Matt didn’t know what we had done until the moment it happened.”
Gabrielle Mauro, PFCC coordinator, said: “It was a special moment for the family. We especially wanted to get Erin, their 7-year-old daughter involved. We ordered flowers and boutonnières and worked to coordinate all the details with wedding decorations — banners, tea lights and their wedding song. Dr. [Maria] Sfakianos bought an anniversary cake. It was really special.”
Mrs. Malley said: “Everything was so sweet. The way the people here went out of their way…it’s such a significant difference from anyplace else. I ran myself into the ground. They put a recliner in the room, reached out to get me therapy and took an interest in my kids, had meals delivered…so many things. It’s not just about the patient here. They really care for everybody and everyone genuinely cares…I mean from security to the dietary staff, even the kind women in the cafeteria, they all know us. They all care. Sometimes, I feel guilty leaving the hospital at night but I know he’s in such good hands. We’ve been through a lot. We’ve had his bag packed to go to rehab only to experience a setback each and every time.”
Still, Mrs. Malley says in an unwavering voice: “We’re both people of faith. Part of our resolve is to navigate the good and bad in our lives. You try to hold on to the belief that it is all part of a larger plan. I believe that. It’s one of the reasons why we’ve never unpacked that bag for rehab.”