Thursday
[From Rod Dow]
Just got back from a great trip to Salt Lake to visit Steve Baker. After a huge funding benefit for his family at Gig Leadbetter’s cider brewery in Garden City, I drove down with one of Steve’s friends, Eric Straubhar. Bubba’s recovery is progressing extremely well. On the second day we were there he started eating real, chewable food for the first time. He can pivot in and out of his bed and needs only minor help getting from there to his wheelchair now. He steers the chair mostly on his own and wheels around without assistance some of the time.
We went outside for a nice, chilly outdoor trip as well, several loops around the landscaping next to the rehab center. Maybe the biggest improvement, among several, is his speech. He carries on extended conversations now (not whispering a couple words at a time, like before, but actually speaking), and of course, his mental capacity and memory and cognition are all intact. He plays banjo, both clawhammer and modern, and sings with the music.
His physical therapy is also moving forward very strongly. He has a long road to go before full walking ability, but has made huge progress in that direction and shows enormous guts and tenacity in the daily PT sessions. The water session was particularly encouraging. They have a treadmill in the bottom of a tub of water. The water level is adjusted depending on how much flotation the patient needs and the side is a viewable window. Steve’s legs were doing a full fledged walking motion just like you or me, the knees and everything working normally. Extremely encouraging.
The only thing holding him back is the function of his eyelids. That is still a work in progress, but his sense of humor is great and his attitude is stellar. It was all very positive and hopeful.
Steve is scheduled to return to his home in Boise soon where the rehab will continue. A giant thank-you goes to Paul Bannister who is with Steve almost every day and who acts as the Logistics Chief for jumper Bros visiting. Paul and Todd Jinkins (and many others from the Boise community) have been rock-solid throughout this whole episode. It gives me great pleasure to be a part of all of you. GO BUBBA!
Sunday
The Power of Community.
[From Liza Rachetto]
As I've followed through these updates and information from friends on Steve's progress, Jono Coulter and I were anxious to get to the Craig Neilsen Rehabilitation Facility in Salt Lake and see where he was at and observe his daily routine. Fortunately we were able to make time this week for 3 successive days of visits and spend some time with him and his amazing care staff & friends. On Tuesday afternoon we sat in on discussions about custom wheelchair fitting and discussion of types of material, durability, etc. Of course Steve was wondering about the cost of upgrading his wheels to carbon fiber. The PTs worked with him on an assisted standing and light swiss ball toss. Steve was keen to get through his therapy so he could play some music. Jono and Eric played a few tunes on the guitar and ukelele, with Steve on the Banjo. It was relaxing and delightful.
Wednesday mid-morning when we came in, we heard the excellent news of Steve being able to drink coffee that morning. When I asked how that experience was, with glee he said "Just great!" One of the "exercises" of the day was AMPCARE so through a non-invasive device that combines electrical stimulation with resistive exercises to improve swallowing function,. This was fascinating as he drank a full gatorade and followed the therapy with a few bites of pudding. His request for after dinner was immediately some "chocolate milk and ice cream".
The next activity was a few rounds of Tic-Tac-Toe on a mirror in front of him,. The suction cup-colored devices were placed at his side so he was forced to work on multiple functions of trunk rotation, hand-eye coordination, while of course winning each round against the amazing Paul! Between the games he practiced sit to stand out of the chair which he did quite rapidly (speed and strength is there) but with vestibular and balance limitations.
Thursday was another day of progression with eye tracking exercises, followed by medicine ball (4#) and tennis ball tossing in various directions. His chair to rehab mat is noticeable better each day it is a true testament to Steve's positive and spirited attitude. His daily schedule is overall pretty busy with occupational therapy, speech therapy, physical therapy, doctor visits, daily activities and visitors coming by. The photos that surround his room, gifts that have been sent, and musical instruments to play are all the incredible support of his community. The friends, family, and fans of Steve Baker have created such an impact on the healing and path to a successful recovery.
-Liza and Jono-
“Hey Jono, is that an apple in your pocket or are you just happy to see me?”
Saturday
A little backslide yesterday. Steve aspirated some food Thursday night, had a coughing fit and developed a fever. They moved to ICU at 5am to stabilize him and run some additional tests. They were successful and subsequently planned to move him back to the rehab hospital yesterday evening. He slept most of the day and didn’t have anything to eat through his tube, so hopefully today they will ease him back into eating semi-solid foods that he enjoyed prior to yesterday’s event.
When I departed Friday evening, all indications were that Steve was back to his previous “ready to get working” rehab self. Saturday continued - this morning, Steve is back in his comfortable rehab room 304. Given that there’s limited staffing on the weekends, they will keep him back on a feed tube until Monday when they can run a new set of X-ray swallow testing to ensure that liquid and food are continuing to go through his stoma and into his stomach, and not inadvertently passing into his windpipe back into his lungs. His lungs sound clear again today, but they have started him on antibiotics just to be on the safe side.
As usual, Steve remains extremely positive today despite his (hopefully) temporary break from solid foods and a good cup of coffee in the morning. Today is a light day activity - wise with only brief occupational and speech therapies this morning and an abbreviated physical therapy this afternoon. As usual, there are no activities planned for Sunday so for those interested in a quiet visit, Sundays are a good day to join Steve. Prior to yesterday’s brief setback, Steve has continued his A++ recovery pace, exceeding all expectations of the many therapist and other staff members assigned to preparing Steve for his return to Boise with all of his friends and family that love him.
In the meantime, his popularity among staff here is just what you would expect from anyone who spends time around Steve and his magnetic personality. Three of his rehab therapists made a special trip over to the ICU yesterday just to make sure Steve was OK and encourage his quick return. The progress Steve has made since I first walked into his hospital room here on September 23 is nothing less than remarkable, which is reiterated by absolutely every hospital employee that works with him. His positive attitude and daily drive to fully recover is an example of resilience that we can all learn from. I have no doubt that this has been amplified by all of the wonderful friends and family that have spent time with him here and shared their love and support through the many letters and emails he receives on a daily basis. Steve thanks you for your support, so raise a glass for Steve at Sunday’s smokejumper/bluegrass cider event!
Warm regards,
Paul Bannister
Friday
During my visit with Steve on November 11 & 12, Steve asked me to write an update, so here it is. (Mike McMillan)
Mel Tenneson and I walked into Steve’s room last Monday afternoon and he welcomed us smiling with outreached hands.
We were in time for Steve’s physical therapy session, starting with sit-ups, then “transfers” – with Steve moving from his wheelchair to his PT table. Steve has strong core strength. Steve is impressing his team of occupational and physical therapists with his grit and his wit, as he works hard at every activity, including the recumbent bike (arms and legs) and also harness-assisted walking around the large PT room with assistance from his therapists.
They assisted Steve with keeping his posture centered which is also dependent upon his vision, something Steve is working to improve with the care of ophthalmologists who visited him while we were there.
Tuesday was the first time in months Steve ate semi-solid food: cream of wheat with brown sugar and butter, and chocolate ice cream for dessert. Steve is swallowing better – another function he’s working to improve daily.
Steve said he could see the snow blowing sideways outside the wide windows in his room, and he asked if it was sticking to the ground. Soon after his occupational therapist came in the room she escorted Steve to the first-floor coffee shop – he pushed his own way there mostly. Steve ordered his coffee with cream and no sugar. We cooled it down a little bit, he put it to his mouth to drink, then again with a smile of approval on his face, his first coffee in a long time.
We played “hangman” as Steve wrote on the dry erase board. First word – 11 letters. My turn. “I already know the answer” I admitted, saying “S” as Steve wrote it down above the first dash on the board. Eric Reynolds joined the group that morning, and was still stumped as Mel and I offered “K” and “M” then an “O”. Mel said “J” and Steve added it to the board. That’s about when Eric figured the word out, so we all gave him a hard time naturally. Next word Steve came up with that we solved was “BUST”. I explained to his occupational therapist that the word refers to when smokejumpers are all jumping fires to their hearts’ content.
Steve’s voice is light but completely understandable when I listened closely and watched his lips. After a lifetime of firefighting noise, it’s a bit harder for some people to hear Steve with one of his vocal cords still idle. But Steve expresses himself with all of his great recollection of people, places, and events from the past.
I ordered Steve a small, portable voice amplifier used by teachers and others, so if it helps then maybe he can be better heard by those of us with compromised hearing, myself included.
We left Steve in the good company of Eric Reynolds and his 8-string ukelele, and Paul Bannister, who is there daily while Steve is in SLC.
Tuesday
This Sunday November 17, Meriwether Cider Company, 5242 W. Chinden Blvd. Garden City, ID 83714 12:00pm start.
Meriwether Cider Company is run by a fire family and Gig, the dad, jumped out of Alaska.
They have concocted a unique cider called “The Smokejumper,” a barrel-aged, 11% apple-smoked cider. 50% of the proceeds of The Smokejumper during the event will go to helping Steve’s family with travel, meals, and miscellaneous expenses. There will be a food truck from 12:00-4:00 and a bluegrass jam extravaganza. So bring your instrument or just your ears and come have a great time with us while we raise money for Steve!
________________
We had a sunny fall day so we took the party outside for some Vitamin D and sweet air. After a bit the boys asked Bubba if he wanted to go back inside, he said “No, but maybe Oded is cold.” as I didn’t have a jacket.
Oded Shalom
Tuesday
A quick update, it was shocking to see my friend so wounded. Dewitz had warned me to be ready, it was still a kick in the gut. His voice is very quiet, and a lifetime of loud noise made hearing him very difficult. What he had to say was the medicine for my shock. First words after hello were to, tease me about my feeble memory, I could see that wry smile on the corner of his mouth.
Being the over achiever he is, it didn’t take long to see his determination come out and crush physical therapy. His PT is very demanding and the people who do it are such pros, he is in good hands. As others have said the cards and emails are a big deal, I read a big stack, he knew everyone, and I got a little dissertation on who they were where they lived, and what the connection was. Steve invited me along for a family briefing, a collection of all his care team letting everyone in Boise know how things we’re going. It was another example of the total professionalism these people taking care of Steve have.
The best moment however, was when it was Steve’s turn, the question “does anyone enjoy bowel care” broke up the room. His primary Dr. told everyone that he had been in this line of care for twenty years, and he had never seen such fast progress in a patient. After the meeting, his PT crew took us out for a bike ride, the whole process was like everything else, total pro. We had a great ride and Steve was the beast in the back, we had a blast. Wind in his face was the highlight.
Jamie Tackman
________________________________________
Update from Matt Germino, with a few more details from his 72 hours with Steve, including sleeping in his room. The story line may help you envision a bit more of what is happening with him and in his room.
On Friday, he was beginning to use a non-motorized wheelchair that has minimal back support, by himself. He is to the point where he can pivot from the bed to position for a staff assistant to get him into (and from) the wheelchair. On Saturday, he drove the electric wheelchair mostly by himself from the bed to the patio outside the building, and then drove a ~150' lap around it. On Sunday, Laura and Sean brought his dog Otter down from Boise, the first Steve has seen one of his boys (see the video and picture). We all took Otter out for a longer electric wheelchair tour outside, the longest one he has had yet, chasing patches of sun in the cold air, and marveling at the fresh snow dusting on the surrounding mountain peaks. The main tube and vital connection that stays with him always is oxygen (on the lowest setting, 1/2 liter). He is on a feeding tube.
Part of the daily struggle for Steve has been intense headaches and clearing the phlegm that apparently is residual from his infection. Inputs and outputs are key considerations. There is a lot going on 1) with "poly-pharmacy", trying to get the meds and their side effects balanced out with the staff, 2) constant replenishment of cold compress for his headache, mostly by his visitors, and 3) frequent use of a vacuum tube to clear the phlegm, which means dealing with tangly tubes and finding switches, etc, by himself with the visitors’ help. A positive seems to be that he is able to clear his lungs/throat pretty well from the wheelchair and can aim some spectacular projectiles that make great art on the sidewalk, if they don't reach the bushes! His muscles and coordination of them to manage his airway seem pretty good.
Steve also started flossing and is working a lot on dexterity. The banjo or guitar gets better by the day, and he tried a few do-ray-me vocal exercises, but generally you have to listen carefully as the voice is still soft. His vision has different aspects: He is lifting his eyelids by their own muscles a bit more each day, but still spends most time with them closed. Sean Murphy's eyelid adapter invention is used a lot. He could see the mountains from his window pretty well and make out the identity of visitors, but can't read text including the digital clock on his wall, yet. He said much of the focal depth is still blurry. I used my laptop to show him the amazing "Just to see you smile" music video that Habitat Vet/Pet Clinic and Lonesome Jetboat Ramblers made for him. He had heard the sound part of it but had not seen the video and could identify the people and places in the video. The video made Steve happy, and if you haven't seen it yet, it is really awesome and can be found here.
In addition to calling Mary Ann for the first time on his iPhone with a bit of help, Steve also got Siri on iPhone to respond to voice commands to play Spotify or his audible book, "Beneath a Scarlet Sky". These seem like more key steps towards independence. Note that if you are texting him to his iPhone, he stated that he is not yet ready to read texts (or have texts read to him), and that will come later. However, he is very excited to get the emails sent to him on healthcare.utah.edu website read to him. The staff print them out daily for him, and they are read to by a friend/family tending to him, and then the printout is saved in the archive in his room. He speaks fondly and with sincere appreciation about the senders, and you can really sense the warmth. Again: Better to email than text him.
Regarding visitation: you won't be surprised to hear that small and spontaneous parties formed in his room, on Friday night and again on Sunday, and most visitors were new to one another (which attests to the breadth of Steve's social world!). There is a Excel schedule for visitors who will assist him, but there are many other visitors. Here is a snapshot: When I arrived on Friday afternoon, Jamie, a jumper from Wenatchee, was finishing his attending visit and was joined by Dylan & Stacy who had flown in from CO, and the veterinarian Brian and his wife from Treasure Valley that were passing through, and the SLC Bakers, Rob and his family, Zach and McKell, were making a routine visit. The SLC Bakers came again Sat night, and on Sunday, Laura and Sean came with Otter from Boise and the party grew to Brain and Sarah from Boise and, as I left, jumper Paul Bannister from SLC who has been with Steve a lot came to visit. What a social life! Steve is very much a people person and loves seeing everyone. If you are thinking of visiting: He is still on antibiotics and dealing with the lingering effects from past infection. Cold/flu season is imminent. Paul Bannister is listed as a local SLC contact if you want visitation intel.
So, I went to SLC to try to help Steve and enjoyed seeing him and the progress in spite of the gravity of the situation. There was plenty to do to assist and enjoying hanging out with him at almost all hours, but I drove away feeling like the experience helped me more than him. We all enjoy and learn a lot from Steve. There are few people in life who could be partially and temporarily paralyzed and yet endlessly creative, humorous, insightful, enriching the lives of others by bringing them together creating connection and community.—even from a hospital bed. One wishes that the doctors, therapists, and etc knew a bit more about the can-do vision, ambition, and capacity that is in Steve's spirit and mind.—builder of business, community, family, cookies, music & bands, houses & barns, etc - pushing the envelope on all these things, simultaneously, in ways that are so far beyond the reach the 99.999% of the rest of us. These traits have to bode well for his journey!
With love! - Matt Germino 5 Nov 2024.
Sunday
I wanted to give an update on a care conference from yesterday. We met with the rehab physician and members of his physical therapy, occupational therapy, and speech therapy teams. They were all super encouraged by Steve’s progress so far stating he is doing far better than anyone could have expected, given the severity of his stroke. They gave us an idea of what to anticipate on his estimated return to Boise, which is currently set for November 27. We had input from physician friends, builder friends, and family on medical care and creating a healing environment for Steve at home.
I just wanted to thank everyone again for your continued love, friendship, and support through this most difficult time. From nailing boards on the deck to tree work in the yard to caring for the dogs, providing meals, sitting with Steve telling jokes, playing music, listening to stories are simply being there by his side, have all helped more than you will ever know. I attribute all of this love and support to how well Steve is doing. Our family feels truly blessed by each and every one of you. We are so lucky to have such an amazing community from Boise.
I also want to thank those of you that have continued to include me and Caroline in parties, dinners, and activities, even though we may not always feel or act our best. It is nice to get out and see people and interact and it means a lot to both of us.
For the first time in two months, my phone rang this afternoon. It was Steve’s number and instead of a friend or physician on the other end, it was actually Steve. What a wonderful surprise.
Please continue to send him healing thoughts and prayers.
Love to you all,
Mary Ann
Monday
I was able to visit Steve on Thursday night and Friday Morning. Luckily Paul Hohn caught me wandering in the door and guided me to his room around 7pm Thursday evening. Steve was in good spirits. We were able to chat some about past memories. He quoted some Monty Python from the Holy Grail and also from his beloved cheese shop skit. He interjected with corrections and additional memories to conversations we were having. His sense of humor was on duty and I came away with a sense that Steve has full access to his memories and connections with people. He had some chuckles for the texts that were sent to me from Bruce Nelson, Bob Nachtsheim, Jon Larson, Jon Weber, and Sunil Ramalingam. He likes these check-ins from people and also appreciates the messages that are emailed and the cards.
The following morning I came in to a full house of Jim Cook, Paul Hohn, Kent Hamilton, and of course Paul Bannister. Steve apparently had a bit of a challenging night and morning and was looking a little rougher than the night before. Jim and Kent had spent some time helping him get dressed for the day and were extremely attentive helping him with his requests. He took a couple of naps and appeared uncomfortable until Paul Hohn pulled out his guitar and began playing. It only took a little bit of time before he noticeably relaxed and then after a while he perked up and asked for his harmonica. He played a few songs with Paul Hohn and was so alert and joyful that when the Speech Therapist came in she encouraged them to keep going as it was great therapy.
If I could add a couple of things, one is that I was apprehensive to come visit my old friend but in true Steve Baker fashion he keeps people at ease with his natural calming fun presence. He has created a positive atmosphere that even affects the medical staff attending to him. Also if you are hesitating on what to write to him I would just say that Steve probably has an inside joke with you or some sort of connection and to just write to him with that in mind rather than something that feels awkward. His brain and personality are sharp and intact and I get the sense that he enjoys regular chatter from all of us. Any message is good and when I passed on a light hearted insult from someone from Alaska that is part of their normal banter he smiled and chuckled.
Finally, there was a very poignant moment when Steve focused in on Paul Bannister and thanked him for always being there for him every day. Banny has been attending to Steve daily and doing an incredible job. Big thanks to him and also to Paul Hohn and his magic guitar.
John Lyons
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Continuing on the theme of past updates, many visitors this week as well. Steve's days were busy with continuous therapy sessions from 9:30am to about 2pm. One of the highlights this week was Paul Hohn stopping in and doing a few songs with Steve from their Armed and Hammered band days. Steve's voice gets a little stronger each day and he was able to quietly sing along as Paul played his guitar. The speech therapists really liked the work Steve put in on the singing.
A couple other progress notes.:
They are letting folks attending to Steve wheel him outside the building in the afternoon following therapy sessions to get some fresh air and sun.
The physical therapists started working with Steve to use a hand propelled wheel chair instead of the motorized wheel chair.
And on Friday our small group went over to the Adaptive Sports Center and Steve pedaled a tandem recumbent bike around outside for about an hour while Paul Bannister steered. Everyone was pretty jazzed about that session. Kent Hamilton got some good video of the ride.
Jim Cook
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Monday
Steve had many visitors Saturday and Sunday from a variety of backgrounds, to include: his barber, smokejumpers, musicians, motorcyclists, high school friend, family, and pet owners. Everyone engaged with Steve, checking on his well-being, telling stories, showing pictures, reading to him, and playing AMAZING music in the room that carried down the hallway. Steve always knows when a visitor has arrived, as he will greet them by raising his right arm 90 degrees and wiggle his fingers back-and-forth as to say, “Hello, Cummon’ In”.
Saturday, Steve had two therapy sessions; speech and physical. His speech therapist focused on exercising his swallowing muscles. For physical therapy, Steve drove himself in his motorized wheelchair, down the hall, into the open elevator, and to the physical therapy room in which he performed inclined, double and single-leg squatting exercises. From an observer's standpoint, he seemed to accomplish the expectations for the day. A consistent theme on Saturday, noticed by the speech therapist, physical therapist, and big brother Rob, who see Steve regularly, was that they all noted an improvement with Steve’s speech and ability to hear him speak.
Steve’s barber, Ryan, and his family visited Saturday. After PT, they propped him back in his motorized chair, and gave him a professional, fresh haircut and shave. He’s looking super sharp!
To remind Steve of the freedom of surfing the Boise river wave, Annie, fellow wave surfer and friend of Steve, sent me to Salt Lake with a small surfboard. Steve felt every inch of the surf board, particularly interested in feeling the rear-foot traction. He was able to attach the rear fin and use an allen key to lock the set screws tight and agreed it was good practice for his dexterity. There is a powerful message on the surf board, "Still I Rise", offering encouragement and inspiration, which Steve can see across the room from his bed.
Mark Skudlarek
Friday
As the theme of most of these updates has been Steve's continued improvement, I will beat that drum some more. Every morning when I accompany Steve to his physical and occupational therapy sessions I see something new that wasn't there the day before. Whether it is the duration he can keep his eyelids open, the ability to lift his left arm over his head, or the determination and concentration on his face as he propels himself with his legs across the rehab floor with the assistance of the zero gravity machine, Steve is making strides every day towards his inevitable recovery.
As many have mentioned in previous updates, it is important to paint an accurate picture of what Steve has ahead. While he is making continued progress, the road ahead will be long and bumpy and his recovery is going to measured not in days and weeks, but rather, months and years. The ENT doc came in today to scope Steve's vocal cords and noticed that only one of them moves. She was not certain if the paralysis of the second cord was caused by the stroke or intubation. She seemed to think that it could be rehabilitated and was going to discuss treatment with her team.
Steve continues to thrive on in-person visits from friends and family, emails sent to the hospital, and the wonderful cards that you are all sending. Every time I pick a card up to read it to him I usually just give him the street address of the sender and ask him who the card is from. Amazingly, Steve can often name the sender. I can't believe it, Steve's brain is like a steel trap that only gathers information and never lets it go.
Todd Jinkins
Tuesday
Steve’s progress in the last two weeks has been amazing. When I walked in the room on Sunday, he smiled and partially opened his eyes and gave me a big hug. He was in the wheelchair instead of in his bed and we were able to take a nice trip outside into the garden. We talked about the stroke, and how it happened, and how he got to the hospital. He is hopeful about his own recovery and his ability to return home in a couple of months. He is working really hard trying to build his strength and become mobile so that he is not confined to a wheelchair. The best news of the trip was the removal of his trach. This will allow him to do a lot more in therapy and perhaps even get into the water treadmill once the trach is closed.
It was so nice to see people visiting with him throughout Sunday and Monday. I am sure he gets lonely when no one is around. Over the next couple of weeks, he should be able to receive more visitors. It is most helpful on the weekends and after 4pm during weekdays when he does not have therapy sessions scheduled and if no one is there, he is just in his room by himself. He should be down there for another five or six weeks. He is really looking forward to being back home.
We want to thank everyone for their continued love and support. His progress thus far has been more than anyone could have expected. He still has a long way to go, but his strength and determination and the love of friends and family are so important in the coming weeks and months.
Much love to you all, Mary Ann
Thursday
Continued good progress the last couple of days. As Paul Hohn noted, Steve has started some walking rehab. On Wednesday, Steve continued with his progress walking. He did about twice the distance on Wednesday as he had done on Tuesday. Steve continues to have several rehab sessions per day including OT, PT, speech, and respiratory therapy.
The biggest advancement over the past few days is that they have started to ween Steve off the ventilator. On Tuesday Steve was removed from the ventilator for 30 minutes and breathed on his own. Wednesday, Steve did 1.5 hours on his own. The plan for the remainder of the week was to continue longer sessions without the ventilator. I spoke to the respiratory therapist supervisor Wednesday and he said he hopes to have Steve off the ventilator early next week. After he is breathing on his own they can start looking at removing the trachea tube which could possible happen as early as next week also. This would be very beneficial to Steve as it would help him rehab his speaking and would give Steve more mobility.
Steve has really been enjoying all the well wishes via cards and emails that he has received. He also seems to thrive on the personal visits that he gets from family and friends. Keep it up!
I was able to capture Steve playing the harmonica and singing along to "Moonshiner" with Paul the other day. Steve wanted the video shared so people can see his progress.
Todd Jinkins
Tuesday
Two weeks, and many changes.
I was able to see Steve two weeks ago as I passed through Salt Lake City on September 24. Steve had just been transferred to the stroke rehabilitation facility and was still settling into this new hospital. Luckily, Mary Ann had shared with me a picture of Steve in his room there, preparing me for what to expect. Despite this, it was striking seeing Steve laid up in his hospital bed with a ventilator trachea tube at the base of his neck. During that visit, Steve communicated by giving a thumbs up or a “so, so” signal with his right hand. His mobility was very limited to his right arm and right leg. Most frustratingly for him, Steve’s stroke inhibited him from raising his eyelids. During this first visit he was only able to open his eyes one time.
Yesterday, I routed through Salt Lake City in order to see Steve again. The changes were immediately noticeable. When I walked in, Todd Jinkins announced I was in the room. Steve opened his eyes with effort. Then he spoke a quiet raspy whisper, “pHohn, glad you’re here.” Steve was able to speak! Although quiet and sometimes fading and inaudible, Steve could communicate with spoken words. Steve’s respiratory therapist explained how they had installed a special speaking-valve in his trachea ventilator which allows him to pass air across his vocal cords rather than escape back out the main ventilator tube.
Small group of us accompanied Steve on his morning physical therapy session. The first step was to get Steve out of his hospital bed and into a motorized wheelchair. Steve’s physical therapist gave specific directions, “grab ahold of the edge of the bed with both hands, Steve.” Steve did as instructed. This was another change from two weeks ago; although still weaker, Steve had some control and mobility of his left arm. Once in his chair with ventilator in tow, Steve was asked to control the wheelchair and follow one of the therapy staff to the elevator. Someone asked if Steve wanted his special glasses that force his eyelids open. Steve gave an audible “no” then forced his eyes open and motored off down the hall to the elevator. Another change from last visit, with effort Steve could open his eyes and could be mobile.
Steve’s morning physical therapy session consisted of a short walk. The therapy staff fitted Steve with a body harness, very reminiscent of a smokejumper parachute harness, then hooked his shoulder strap rings to a body-weight-assist winch attached to a roller track in the ceiling. Steve placed his elbows in an elevated walker, then started the laborious journey to the other end of the room. Staff assisted Steve in moving his legs, keeping his hips even and under his body, and his head up. With encouragement and prompting, Steve would make adjustments as he shuffled 25 feet down, sat to rest, then made the return trip. During this walk, the body-weight-assist winch was supporting 25% of Steve’s weight. This walk was very clunky and strenuous, but Steve showed he was willing to work hard.
When Steve returned to his room, his physical therapist said he was going on a Colorado River rafting trip and would be out the rest of the week, so Steve would be getting a substitute starting tomorrow. Steve said, “Emerald Mile, read that book.” Steve’s friend Murphy, also in the room, explained that The Emerald Mile was a great book about the fasted boat ride in the history of the Grand Canyon. Obviously, Steve was tracking.
I finished my visit by offering to play some guitar for Steve. In the early 2000’s Steve and I used to play in a two piece band called Armed & Hammered. I asked Steve if he had any requests, he said, “All the hits….. Armed & Hammered,” while giving his crooked snarly smile. I played songs Steve and I knew well, and Steve quietly sang along and played air-guitar and air-mandolin while reclining in his wheelchair. Someone in the room put a harmonica in Steve’s right hand, and he began to play along with one song. I noticed Steve flip the harmonica around so the high notes were on the correct side (the right side like a piano’s keys).
I stopped and ask, “what key is your harmonica in?”
Steve answered, “G.” Then he said, “play ‘Moonshiner’”.
This song is in the key of A Minor, whose relative major is G. This song also has a distinctive harmonica part and was an Armed & Hammered standard. I began the song, and on time, Steve came in with the basic framework of the harmonica part. As our playing session began to wind down I told Steve I would need to get on the road soon, Steve said, “he’s got a long dive”, which I did - 6 hours.
As I went to Steve’s side to say goodbye, I and grabbed Steve’s hand. He pulled me in and whispered, “Your great.” This was an inside joke we had after playing a show. At the end of every gig, Steve would always say this, with the known expectation that I was supposed to say, “No, no. You’re great!,” which I did.
Steve is working hard and making incremental improvements. The progress was very noticeable over a 15 day period. He still has a very long road ahead. The letters, photos, cards, and visitors all help to energize Bubba, after all, he is a people person. I am most relieved that Steve is still Steve. His mind and personality are still intact - just like his “Moonshiner” harmonica solo, the framework of Steve is there.
Paul Hohn
Saturday
As I read back through Rob's update from Wednesday, I will just tag onto that. Steve continues to make impressive incremental improvements each day. Over the last several days, I have watched Steve make progress in his ability to cough and swallow which, according to the respiratory therapists, is essential for him to remove the trachea tube. He regularly uses the suction device himself and the therapists encourage him to work on swallowing secretions whenever possible to re-engage his throat muscles.
He had an impressive PT session yesterday where the therapists had him standing for about 5 minutes and switching his weight left and right. He is regaining some of the left leg weakness he has been experiencing. He did not need any help to hold his head up, just some verbal encouragement. The plan for next week is to get him walking with the assistance of a stand up walker and some help from the PTs. I have no doubt that Steve will perform as he always does, flawlessly.
The left arm is still weaker than the right but is regaining more movement every day. Today, Rob brought in a banjo and Steve had a couple sessions of playing AND singing. It was exciting to see him sitting up and engaged. He is still 100% in there, just waiting to blossom again like a spring tulip. He stays awake most of the day now and we have been keeping him busy with music, books on tape, and reading his birthday cards to him. He really loved hearing those cards! On that note, we got through all those cards and I know Steve would love to hear more, so keep them coming!
One of Steve's docs came in today for a check up and asked if there was anything he could do for Steve. All he said was "Get me out of here". So on that note, I will end knowing that Steve is going to give it his all to get back home to the family and community that loves him.
Todd Jinkins
Wednesday
(This is from Rob Baker who lives in the Salt Lake Valley.)
So how is Steve doing? The answer is “yes”. I know that seems a little vague…as intended.
This is the beginning of his rehab. The therapists are establishing a “baseline” for Steve. As rehab continues, we will have this baseline to compare and see Steve’s progress. Let me give you a baseline from watching Steve yesterday.
Steve had physical therapy. They had 5 people helping him to stand, Yep, stand. One of the therapists helped hold his head up from behind and was holding his eyelids open so that Steve could see himself in a mirror. It is still difficult for Steve to open his eyes without help. Actually he used his own right hand to reach up and lift up his own eyelid so he could see who was in the room. Haha.
Good News… Steve got on an exercise machine that moved his arms and legs and he did it. Yes, slow and his left arm would come off the handle but he did it. The therapist let him work on the machine for about 7 minutes.
They suction out his mouth and throat regularly. It is like when you go to the dentist and they stick the tube in your mouth. Actually, Steve likes to do that. We give him the suction tube and he clears everything out. Good News…he can hold the suction tube himself with his right hand.
With his right hand, he can give us basic signs like thumbs up or down. Communication is still frustrating for him and us. I know he would love to tell us more about everything. Hopefully he will be better able to use his vocal cords and depend less and less on the trachea tube.
He still has a trachea tube in. It will be there for a while. A while probably means close to a month before it is completely removed (per the respiratory specialist). The respiratory therapists said Steve is being slowly weaned off the tube. They are going to let him do more of his own breathing as he gets stronger. Good news they say he is doing great. They spent 90 minutes today helping him whisper some words and breathing exercises.
Moving forward, it will be easier to give updates as we all know the baselines or in this case from where he started on this journey. He is doing better, just ask any of the people with whom Steve is working. They will tell you that he is doing great. I just wish their idea of great was my idea of great. My idea of great would be Steve singing, riding, dancing, and playing next week.
So, how is Steve doing? Yes. Progress. Positive direction, it’s just a long path back. Your love and support are felt by Steve and those around him. Please keep him in your prayers and meditations. And most of all, stay engaged with Steve and his progress for as long as it may take.
Monday
Just wanted to give a quick update on Steve. Caroline and I went down for his birthday on Saturday. We delivered cards and presents and read cards to him a few at a time. We really appreciate everyone’s love and support. Progress is slow. He is still not able to open his eyes and is requiring a lot of assistance for normal activity. For those of us that know Steve well, I can’t imagine how frustrating this is for him. He has many hours of therapy each day and we will hopefully start to see some improvements.
Caroline and I are so thankful for all of the love and support that our family continues to receive. I will try to continue to provide updates, but it might be a little difficult since I am not down there with him. we have many friends in the Salt Lake area and friends who are planning to spend time with him so they can help with updated information.
Much love,
Mary Ann
Thursday
Apologies for the late notice. Steve’s birthday is Saturday. Boise folks: You can drop cards at their house until 8pm Friday. Use the box at the gate of their driveway. No treats due to dogs and critters access. Romy is the point-of-contact: (208) 850-9229. His mailing address is on the Get Involved page and below:
Attention: Steve BakerNielsen Rehabilitation Hospital, Room 30485 N. Medical DriveSalt Lake City, UT 84132Wednesday
Thank you so much for continuing to follow Steve’s progress. We had a little setback earlier this week when he was transferred from rehab to the University of Utah to undergo some monitoring and some more testing. I just got good news this morning that he is being transferred back to the rehab facility later today and will start therapy and his road to recovery. I plan to be down there this weekend and will hopefully have more good news later this week.
-Mary Ann
Sunday
Steve was transferred on Saturday to Craig Neilsen Rehab hospital in Salt Lake City. His transfer went fine and he is getting settled into the new environment. He has an amazing view of the mountains and a nice big room. They have been running tests to get some baselines on arrival. He is having a few more tests today and will start his rehab tomorrow. There is an amazing team of physicians, nurses, and therapists who are here to guide his journey. I am excited for Steve and hopeful for an amazing recovery. Stay tuned for updates.
-Mary Ann
