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
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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.
