Thank you for visiting Kevin’s site. We have used it to keep family and friends updated. Throughout the past months, we have appreciated your support and words of hope and encouragement. Now, as Kevin rounds the corner and approaches a year since he got sick, I thought it would be good for us to remember the story of these last months: what Kevin had, how he got it, how it progressed, how we knew how sick he was, symptoms, and so on. His story is also Lorraine’s to some extent, and also that of the friends who were on the team of first responders, and likely saved Kevin’s life. No names, at least for now, but you know who you are, and have our eternal gratitude.
Kevin contracted Neuroinvasive West Nile virus sometime in the second half of August, 2017. It is transmitted by mosquito bite, and reactions to the infection vary from symptomless or maybe a slight fever, through bad flu-like symptoms, to what Kevin got: high fever, encephalitis and meningitis leading to flaccid paralysis (https://www.cdc.gov/westnile/symptoms/index.html
). He got it all. There is no anti-viral drug for it: treatment is supportive care. Really all the medical profession can do is make sure the patient doesn’t die from lack of oxygen or an associated infection (and by some estimates, as many as 18% of those who get the neuroinvasive version of WNV die). Kevin doesn’t “have it” anymore, but is now healing from all of the aftereffects, a suite of issues summarized as critical illness polyneuropathy. Like a newborn, he has had to relearn life skills ranging from eating to walking, and reform neural pathways from his brain to his toes.
We live within a couple of miles of WNV positive-testing mosquito traps and a couple of documented cases of it in 2017. Incubation is 2 - 14 days. We are active, outdoorsy people, and do use mosquito repellant. The weekend before Kevin went to the hospital, he rode 65 miles with a friend through the farmlands of Cache Valley, UT. The weekend before that, he ran a Spartan Sprint near Washougal, WA (we spent a night before in Gresham, OR; the night after in The Dalles). The weekend before THAT, we were in a place with lots of standing water; in between, we were all around the Boise area.
I had planned a trip to stay with my then-96-year old mom over Labor Day weekend while my brother and sister-in-law attended a reunion at a campground in Utah. While they take the brunt of the caretaking load, I’ve been helping out as I can over the last few years, so it was to be a routine trip, but short because Kevin and I were supposed to leave on a hiking/biking adventure with friends a few days after I got home.
Kevin seemed fine, if a bit tired, Monday and Tuesday of the last week of August. Tuesday night he didn't feel well, and on Wednesday he was running a fever. He stayed home from his work as a trainer at the local gym, and seemed to be getting better. Thursday morning he felt pretty bad, had a fever over 102, and said he was going to the doctor. "Great! Good idea, call me when you have news" said I, and jumped in my ride to the airport. When I hadn't heard from Kevin by the time they announced my plane I contacted a friend who lives nearby, told her the situation, and asked her to check on Kevin and Pudge, our 13-1/2 year old golden. Meanwhile, I headed south to my layover in Oakland. There I heard from Kevin, who said he’d gone to the hospital for tests and drugs, and our friend was driving him home; I heard from our friend, too (profuse thanks from me, plus I asked her to continue to check on Pudge). I made it to Burbank, said “have fun” to my brother and sister-in-law, and hung out with my mom. I tried to reach Kevin that evening, but was not really worried when I didn't hear from him. I figured he took some good drug and was sleeping.
The next morning, Friday, September 1, 2017, I heard from our friend. Kevin had called her to say he was feeling really weak and could she take him to the doctor. He couldn’t get into the car without her help, and she went straight with him to the St. Luke’s ER.
Meanwhile, I'm getting ready to have a usual day with Mom, except that the Friday caregiver had called early in the day with a terrible cold. No problem! Mom and I could bumble along. I'm not as skilled as her regular caregivers, but I could meet all of Mom's needs and we didn’t want to expose her to germs. I again heard from our friend in Boise: they were admitting Kevin to the hospital; the admitting doctor would call as soon as possible. I was still not worried, figuring Kevin was dehydrated, and would just spend the night, then come home, still sick but on the mend. The doctor called to say Kevin would be admitted to the ICU; I explained that Mom couldn’t be left alone and that I was planning on coming home on Monday, but the doc said says that if she were in my position she would “come home as soon as possible”. I panicked a bit, but got organized and tried to find someone to stay with Mom at night; got in touch with my brother (who was of course extremely helpful, once he got into cell-phone range); talked to the hospice chaplain who put me in touch with the care-giving side of the hospice company; tried to get a flight home, but found that while I could get out of southern California as long as I was willing to drive to Ontario or Orange County or LAX (i.e., NOT Burbank – no seats on any flights at all), I couldn’t make a connection to Boise until the next day! By the time I figured out maybe an airline would bump someone for me if I asked, and I belatedly returned a call about nighttime caregiving, it was too late to make a same-day connection had one even been available. Luckily, I found a flight for the next morning, my brother had made arrangement for someone to come be with Mom early on Saturday, and after an extremely early start, I got into Boise around 2:00 p.m. on Saturday.
The first few hours back in Boise on Saturday, September 2, were pretty chaotic. One of our stalwarts picked me up and took me straight to the hospital. Although I had let our son know as soon as I knew anything, at first I was not with it enough to think about him coming home. We had been in constant touch since it all started, and he had talked to his dad on Friday and again on Saturday. When I got around to that thought, I asked about whether or not…well, the doctors called it “an end-of-life” situation, but really we all knew the question was, “is Kevin dying?” They said probably not but that even if he were, the progression would not be fast and if things started to worsen there would be time for anyone to get to Boise, even if coming from Europe. During this time, Kevin was heading downhill in terms of cognition and weakness. By the end of Saturday, Kevin would not have known if anyone was at his bedside or not, so coupled with the medical opinion, the urgency for family to be there was gone. We decided that, unless anyone felt he/she needed to be by Kevin’s side, they should bide their time. I was just as glad – I had enough to think about without worrying about travel arrangements and how anyone else would handle things. I was in constant communication for several days with people, and continued to keep essential people in the loop. Family has visited and plans to make future visits.
Kevin spent 13 days in the St. Luke’s ICU, where at first he was intubated, then received a tracheostomy, and later a G-tube, then was discharged to Southwest Idaho Advanced Care Hospital (SIACH) a long-term acute care hospital. After about 2-1/2 months there (with a short, emergency return to the ICU for a collapsed airway), and once medically stable, on November 30 he moved to Wellspring, in Nampa, the only sub-acute care and rehabilitation facility in southwest Idaho that would admit patients on a ventilator. Things progressed until early February, when infection-related kidney stones and sepsis sent Kevin to the ER and ICU again, this time St. Alphonsus, first in Nampa then Boise. After a week back at Wellspring, pneumonia and a collapsed lung sent him back to the ER and the ICU, again Nampa then Boise.
From St. Al’s, Kevin moved to Vibra (SIACH having gone out of business). Within a few weeks, the doctor determined that Kevin was ready to get off the ventilator, and the trach was removed soon after, as was the G-tube. March 29 Kevin transferred to the St. Luke’s Elks rehab hospital; May 3, 2018 he came home, after having spent almost exactly eight months in various hospital settings. In that time the world continued to turn: the seasons moved through autumn, winter and spring; our son visited twice from Europe; Kevin’s brother came; our dog died (old age); and now it’s summer again.
Friends supported us and accomplished extraordinary things for us, disrupting their schedules, investing time and funds and just generally letting us know that Kevin was important to them. I don’t know how I would have made it without the support of the various communities that are in our lives. In addition to our amazing friends in Idaho, CABI, and our far flung, extended families, people surfaced from Kevin’s high school, college and grad school, colleagues from former jobs, motorcycle compatriots, and others.
Kevin continues his healing. We have so much to be grateful for. His intellect is intact, his sense of humor is there, and he is getting stronger. He didn’t die. We have access to transportation, therapies and live close to many services. There’s a long way to go, but thanks to friends, family and caregivers we are confident he’ll make it.