Man defeats the West Nile Virus with self-determination, supportive family, and persistent therapists.
Written by Rachel Meester, MA/CCC-SLP
In August of 2013, Charlie Davis was known around town as just an ordinary 64-year-old man—a husband, father, grandfather, and friend to many. We wouldn’t label him as ‘healthy’ per say, as he was experiencing limitations due to recent medical diagnoses. In 2009, Charlie was diagnosed with diabetes and renal failure. He was a regular at dialysis and almost wheelchair bound, but he still managed to make it to his favorite car shows, races and the occasional trip to Deadwood with his wife, Carol; however, on August 30th, at his favorite event of the year, “Cool Deadwood Nights”, Charlie just wasn’t himself. Yes, he was excited to be in Deadwood to watch the parade and look at the cars, but he was very ‘sluggish’. Carol recalls that Charlie turned in early that night and kept saying over and over again how he just wasn’t feeling well. A few days later, back in their home in Rapid City, Carol reported that Charlie’s sluggish demeanor continued along with complaints of not feeling well. When Charlie only took two bites of his evening meal then insisted on going to lie down, Carol knew something wasn’t right. She then describes a “parade of going back and forth”. Charlie could not decide whether he wanted to sit in his chair or lie down on the bed. Back and forth they went, with Carol getting the brunt of the heavy lifting and transfers. She finally called their son-in-law Mark to tell him it was time to take Charlie to the hospital.
On the ride to the Rapid City Hospital, Charlie almost acted completely normal. He chatted with Mark about cars and the weather, but then began talking about ‘plates flying in the sky’ and other things that just didn’t make sense. At that time, Carol and Mark were sure that he needed to be seen by a doctor. Once admitted, the IVs and countless tests began. Charlie became more and more ‘out of it’ as each minute passed. By the next day, he was on a ventilator to help him breathe, had a feeding tube placed for nutrition, and was diagnosed with the West Nile Virus. After six days in the Rapid City hospital, it was decided that the only chance Charlie had of survival was if he could be weaned off the ventilator, which this hospital was not equipped to do. Carol and the family made the brave decision to transfer Charlie to Sioux Falls, where they could only hope for the best, but prepare for the worst.
Once transferred, it seemed as though Charlie still couldn’t catch a break. He contracted virus after virus and infection after infection. At this point Charlie was still on a ventilator, as well as the feeding tube. There were two separate times when Charlie’s family was called to Sioux Falls because the doctors were sure he wouldn’t make it through the night. To everyone’s surprise, he did. Carol remembers one of the nurses saying, “We can’t believe it! He’s still hanging on!”
Because of the severity of Charlie’s condition and how long he had been in this state, Carol and the family began to question what Charlie’s function would be if he were to survive. The doctors could not give a definite prognosis, but informed them that Charlie would be “just like a baby again”—he would not be able to talk, to walk, to eat, to feed himself, to get himself dressed, or even to sit up in bed. The immediate thoughts and fears of, ‘Oh my God, how can we live like this?’ ran through Carol’s head; but, she thought, if the doctors are right and we can get him off this ventilator and into therapy, he will at least have a chance of coming home. The most important thing to Carol, and the only thing she really hoped for, was that Charlie would once again recognize her. By the time November came around, Charlie was breathing on his own and ready to be transferred to an intense rehabilitative therapy unit.
On November 2nd, 2013 Charlie arrived in Mitchell, South Dakota, where he was welcomed by the team of therapists from Integrated Therapy Services (ITS) to begin the long road of rehab and recovery. He was expected to participate physical, occupation, and speech therapy for 2-3 hours a day, 5-6 times per week. It is safe to say that the Charlie we met that day was not the Charlie we would be privileged to work with for the upcoming months. Our initial perception of Charlie was that he was not only medically unstable but had numerous physical, functional, and cognitive deficits that all impacted his ability to communicate and participate in therapy. Because of the severity of these deficits, Charlie often exhibited anger, frustration, agitation, and aggressive behaviors. It was truly as the doctors predicted—Charlie could not sit up, could not have conversations, could not walk, and could not eat by mouth. Each therapist took it upon herself to put aside the feelings of frustration and remember that they were not just trying to help a ‘patient’, they were trying to help Charlie—a husband, a father, a grandfather, and a friend.
The first few weeks of therapy were not easy. Each therapy had its primary focus and we worked as a team in order to give Charlie the chance he deserved to make a full recovery. The initial goals focused on sitting up in bed, performing functional daily tasks (i.e. brushing teeth, combing hair, etc.), following commands, and swallowing. Charlie was still ‘no food by mouth’, or NPO, at this point and receiving all nutrition through a G-tube. Documentation from these first weeks reveals maximum assistance of 2-3 people for all transfers, maximum cues to complete all tasks, and inability to initiate and complete a swallow. ITS tried to provide as much consistency as possible in terms of therapists and scheduling in order to treat Charlie at his best times and allow him to truly trust those working with him. To be completely honest, there were tough times when everyone was questioning if recovery was possible.
The ITS therapists all recall different turning points in Charlie’s rehabilitation. The OTs witnessed Charlie sit up in bed (unassisted) then combing his hair to get himself “prettied up for the day”. The PTs had a full conversation with Charlie, and when he would usually fatigue and give up, he looked at them and said, “Well, what’s next?” The SLPs who had been unsuccessfully administering trials of pureed textures by mouth for days (which were usually spit out) gave Charlie an entire dish of pears and only witnessed two coughs. After he finished the bowl he said, “How about a meat lover’s pizza?” The amount of excitement and feelings of relief felt by the therapists were indescribable. As each day went on, we gradually saw more and more of the real Charlie—the motivated, caring, humorous Charlie that we had only heard stories about when speaking with Carol and his family. Charlie showed consistent progress in each therapy, meeting goal after goal and challenging the therapists to find different ways to increase the complexity of what he should achieve each day. By the beginning of January, it was a very realistic goal that we would be sending Charlie home again.
By the end of Charlie’s therapy journey, he was truly the highlight of everyone’s day. He would walk up and down the halls with his therapists and shout at the nurses as he strolled by, so they could see how far he had gone that day. He was utilizing specialized equipment to get himself dressed in the morning and bathing himself in the shower. Charlie also got what he requested early on in his therapy stay; he was able to eat meat lover’s pizza safely without any difficulties chewing or swallowing. The following responses were gathered from Charlie’s therapists when asked, “What was your favorite part about working with Charlie?”
“How do you choose just one favorite part about Charlie? He was motivated, driven, kind, humorous and grateful. Not a day went by that Charlie didn’t make me laugh. Even when the simplest tasks seemed impossible, Charlie never gave up; he never quit trying. And when Charlie accomplished simple self-cares, such as feeding himself, he was thrilled and appreciative. Charlie was a daily reminder of the things we take for granted each day; And a further reminder as to why I became an occupational therapist, to be a small part in someone’s journey of regaining control, independence, satisfaction and happiness in their life.”
“Charlie was truly the highlight of my day. He was consistently grateful for everyone who was there to help him, an inspiration to fellow patients, and constantly watching over others who he felt needed extra support in order to keep themselves going. To have been a part of Charlie’s recovery and help him return home to his family was extremely rewarding. He will have a special place in my heart forever!”
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