Help the Neuhofer Family assist in Armin's Healing

Update April 25, 2024:

It’s been a week and half since my last update and so much has happened.

Armin continues to get stronger, and a little more like himself, every day or two. A while ago, he was laughing that hospital room life is a bit like being “survivors” who eagerly squirrel away any leftover snacks or supplies we come across. That plastic bag or elastic bag might be needed - put it away so it doesn’t go!

On April 19th and 20th, Bernhard, Ansel, Marcus, Tesla, and Kirby returned. Armin had been very much looking forward to their arrival over the preceding days. Kirby very much enjoyed long bouts laying on Armin’s bed with him. Tesla’s classmates had put together a loving card and gift just for her and Armin was so touched to see how happy that made her.

The 19th was an excellent day because the g-tube site healed enough that Armin could use the pool here at Glenrose. He loved getting back to swimming. And the movement was so good for him. His swollen right foot has been unchanged for around six weeks, but the swelling had decreased the day after he first went swimming. He got two pool sessions earlier this week as well, and again, a small decrease in foot swelling.

Later that night, our family went out for supper with my sister Janis and her family. We were happy to take them and Armin to an excellent Italian restaurant we have found. Evidentially the evening atmosphere is a LOT louder than lunchtime, so it did slightly thwart conversation, but it was still a nice time. Janis and Dustin and their boys have been so helpful throughout, with wide ranging offers from them and requests from us.

On Sunday, a friend of mine made arrangements for us to meet a fellow member of a local car club. This was fantastic, meeting Mark, who owns a beautifully rebuilt classic Datsun that is Armin’s dream project car. They had a good chat about all the amazing work and energy Mark put into the car over the years, and he took Armin for a drive. First time Armin has been in one on the road. Total bliss!

In these past couple weeks, Armin’s building strength has made him much more itchy to get out of the hospital as well as being away from the noisy room. He and I settled into a rhythm of leaving immediately once his afternoon therapies were done, and not returning until bedtime. I took him out for supper. We spent lots of time relaxing or napping at the hotel. A couple days he did additional workouts at the Kinsman Sports Centre. We’ve also been able to connect with friends and co-workers over a couple of these suppers and that has been really “good medicine”.

In a funny way as we’ve gotten more mobile, it feels like having a baby again. That is NOT to diminish Armin in any way. It’s all situational: shifting gears that now there is always gear to take along (wheelchair, walker, crutches, etc) And always multiple conscious steps to getting something done.m. And everything takes longer. . . . getting out the door, etc. Neither Armin nor I are complaining; it’s just a return of a rhythm that we haven’t been in for a while.

This week has been so full. Legal things to do, CWB meeting, discharge conversations and plans. Armin was so focussed on his Wednesday follow-up with his surgeon. SUCCESS! Clearance for full weight-bearing. Proceed as-tolerated with unrestricted Physio. NO MORE AIR BOOT (that was causing him considerable pain and discomfort). The small joke on us is that neither Armin nor I considered that if he DID get that long-wished-for ok, we’d need to have brought a shoe for his right foot. Ha!

Another first for both of us this week, was going to a large courthouse. We were there to order searches of criminal charges to see what the history of the accused is prior to February 2024. It’s quite the sobering comparison to be standing there realizing that the threshold of safety for the people in that building is that I cannot enter with the cuticle nippers I had in my purse (“because a person could do a lot of damage with those” according to the security guard). Yet people who work within the system that building represents, make decisions like even in the aftermath of this horror, granting the accused the ability to be released into the community on the very weakest of conditions. It seems “safety” is just as elastic a term as is “justice”.

Today, Armin had a cooking session in Occupational Therapy. We went grocery shopping last night as Armin ambitiously chose to cook chicken linguine in a cream sauce with mushrooms and spinach. Oh, and a side spinach salad with tomatoes and berries.

He got the chicken prepped, seasoned, and cooked. He got all the onions, garlic, and mushrooms prepped, shopped and cooked. He got the salad ingredients together and ready for the pre-made dressing. He was finding his way around a new kitchen and cooking for the first time in two months, on the first full day since he’s been able to not use crutches. Throughout, he was noting that he was moving too slow and he was worried about getting done within the available time. At 1hr 45min he hit the wall with physical and mental fatigue. He felt quite discouraged and that he had failed. Both his therapist and I thought he was a 100% rockstar. He did everything normally and safely in the kitchen. And he was able to self-assess when he couldn’t do more. Armin had to go back to the room for a nap, while I finished the pasta.

Throughout the entirety of rehab, Armin has been incredible. “Proud” doesn’t really touch how I feel about what he’s accomplished. He gave it his best EVERY SINGLE DAY. He took part consistently in every activity that was suggested. He never had a day where he was too tired, too frustrated, or too angry. Anytime a therapist checked in whether he was ready to stop an activity, or asked whether he could do 10 reps or 12, he always took the higher bar. The patient constancy he has approached this with is rare, I think, based on reactions. He is deserving of every success he’s achieved so far, and will continue to gain going forward.

We are going home soon and Armin is getting really done with hospitals. Rehab will continue in Russell over the many months ahead. I’ll continue updating - probably every couple weeks over this next while. The first few days, he gets to sleep in as long as he wants, and do whatever he pleases.

Shannon Neuhofer

1-306-527-5851 call/text

Update April 16, 2024:

Armin’s fantastic physiotherapist, Rachel, continues to get creative to keep him moving and progressing. Yesterday, she set Armin up with a make-shift “sled”. He wore a waist belt tied to a rope, dragging 22lb behind him. At the same time, he wore the weighted vest, with I believe 11-13lb loaded into it. Then moving around the loop in the building’s hallways, on crutches. Oh - and the extra 6lb ankle weight strapped on his right leg. The loop is 100m and he did it twice in 30 minutes, which allowed the last 15 minutes of his session for core-strengthening activities seated on a large exercise ball.

Today, she set him up doing interval training on an assault bike. It’s one of the few things Armin can do for cardio right now, until he can either weight-bear on his right foot, or had the g-tube site healed to get into the pool. If you are not familiar with an assault bike, imagine a stationary bike with typical pedals, but with handles you push and pull with your arms. The arm handles and the pedal crank are linked, so you work upper and lower body together. She was quite satisfied to get Armin into a red warm, slightly-sweaty state.

The quest for a private room continues. Armin is increasingly stressed out and agitated with the noise and disruption from his roommate. He has gone from asking me about this once every three days, to four to six times daily. The effects of the constant disruption and distraction are cumulative. The frustration he feels from many background noises, is one area where I can see continued impact of his injury.

Armin’s perception of background noises that would have been unremarkable in the past, is heightened since he regained consciousness. I have made multiple verbal requests for a private room. I have written a letter to the staff (which I now understand was widely distributed). I have met with the charge nurse. I have met with a patient care manager. I have met with the doctor. It is very disappointing to see everyone playing hot potato with the situation and hiding behind policy while telling me all of my questions or suggestions to try to mitigate their lack of solutions, are “absolutely not” possible.

So far the results have been a combination of sympathetic remarks that their hands are tied if anyone comes into the unit with isolation requirements (which could be something serious like MSRA, or could be symptoms of the common cold). I’ve been told that moving brain injured patients between rooms is incredibly disruptive to them, so Armin should endure consistent day and night disruption as way of ensuring he won’t potentially experience the temporary disruption of being later moved out of a private room. This rationale rings a little hollow since we were told the day Armin arrived at Glenrose that we should expect frequent room shuffles (back when WE asked isn’t that disruptive in brain injury recovery). I’ve been told that private rooms are allocated to requests such as we are making, only if there is excess capacity after a very limited assortment of prioritized needs are satisfied. However I know of two cases last week, where private rooms were given to incoming admissions over Armin, for other reasons that are less substantive (and more presumptuous on the part of the staff), than what we have relayed to them about Armin’s request. Both of these took place after they told us he would be moved to a private room last Tuesday unless they got squeezed with an isolation case. Meanwhile, multiple other staff members have told us they see this being handled improperly and to continue pursuing it. It is exhausting. It’s unnecessary. And it’s poor care.

Despite that trouble, we are doing what we can to get Armin into more positive environments more often. One meeting and one therapy were cancelled this afternoon on short notice, so we jumped at the chance to make a change to give Armin’s friend, Douglas, a ride to the airport, allowing the two of them to squeak in a bit more time together. Douglas came from Scotland in February and has been back-and-forth between Russell and Edmonton, several times over the past couple months. We are very grateful for his support of Armin and his parents’ help facilitating travel.

Armin and I went back to the Kinsman Sports Centre for 2.5 hours this evening and Armin had a really good workout session, using both their weight room and their Functional Training Centre. After that, he and I had a really nice supper together before heading back to the hospital.

Shannon

Update April 12, 2024:

On Wednesday afternoon, I took Armin to the Kinsman Sports Centre here in Edmonton. What an amazing facility! He was very happy to get back in the gym, despite the limitations of his right leg and foot. He spent an hour and a half on various weights and machines while I waited nearby and helped do things like adjust the settings on machines, wipe things down after use, and move the crutches and wheelchair around.

Thursday was a milestone for a couple reasons. It's been two months since the collision. So 60 nights in hospital. One long-awaited improvement was that the g-tube was removed today. If you aren't familiar with these, there is a balloon end that holds it in place. To remove it, the doctor just yanks. Armin and I both imagined that the bulbous end might double the diameter of the tubing. But it's much larger - probably an inch in diameter. Like the tracheostomy, nothing is done to close the wound. I don't understand why they don't put in a stitch or use steri-strips. Hearing that "it will heal like a second, smaller belly button" isn't exactly pleasant. Armin is VERY happy to have the g-tube out. FINALLY. . . the first time in two months to have no wires, tubes, monitors etc stuck in him or attached to him! To celebrate today, we got tulips, and fancy drink umbrellas.

This afternoon we went out to two motorcycle stores. Lots of bikes to look at and lots of sold signs. Spring has arrived. For supper, Armin picked shawarma, so I took him to Jerusalem Shawarma. So delicious! What a busy place. Next on our field trip was an exciting hour milling around London Drugs. We did manage to replace Armin's sunglasses. Their frame had been cracked in the collision as they were in his jacket chest pocket and took the force of the airbag.

Armin's foot continues to be quite painful on a constant basis and the continued prohibition against full weight bearing has plenty of implications for his physio. Bit by bit he keeps at it. He's doing what he can to increase joint mobility and regain strength.

Shannon

Update April 8, 2024:

Things keep moving along here at Glenrose. Armin's doctor continues to treat the granuloma that developed around his g-tube. The goal is to get that under control this week, so the g-tube can be removed at the end of this week when it hits the 6-week mark. Armin is so looking forward to having it out. Now that we know how common granulomas are with g-tubes, and that the Glenrose Hospital changes those dressings daily, it really brings into question why the standard of care in the neuro ward at the other hospital was to change dressings every eight days. With more frequent dressing changes and inspections, the emerging granuloma would have been noticed earlier and treated more simply at a less developed stage.

Physiotherapy keeps ramping up. Armin is using crutches now, but still also has the two-wheeled walker and the wheelchair. Today he had to "step" sideways on his knees, to reach over his head to move rings off of a hook positioned right of his reach, to a hook positioned left of his reach. It was hard to maintain balance, keep his upper body straight, and lift his knees high enough to get clearance on the padded surface.

Some scheduling changes this week and an on-site dental appointment this morning, meant Armin was booked solid until he was done at 3pm today. He was tired, so I left him to nap and have supper, while I went out for a few hours to shower, get supper, and run errands. Armin is in a locked unit and allowed out only with a supervising adult. If you are leaving for purposes other than scheduled therapy, you sign out on their white board.

I'd been gone a couple hours and texted Armin to ask how things were going.

Armin: "Good, except the gym was closed."

Mom: "Huh? What gym?"

Armin: "The fitness centre."

Mom: "Where?" (half-wondering if this is some mixed-up comment about the Russell Fitness Centre)

Armin: "3rd floor"

Mom: "Oh, those are just for therapies. They are never open for free use. Were you going around by yourself? Or walking with a nurse?" (The nurses sometimes take patients around the halls for exercise)

Armin: "By myself lol"

Mom: "Wow" (while wondering "what?!")

When I returned, I pieced together what had happened by further talking to Armin and talking to the nurses. After supper, Armin wanted to work out for an hour or so, in the gym he had used during physio the other day. He got one of the nurses to help put his air boot on his foot. Then he got himself into the wheelchair, went out into the hallway, and wrote on the whiteboard (Armin says he wrote, "Armin, gym 6:30pm", one nurse says she doesn't think he signed out, another nurse said he wrote "Armin, outside with family"). Then he asked to be buzzed out by a nurse at the desk whom he didn't recognize from prior days and she buzzed him out.

Shortly after he left, one nurse asked another one which patient that was who had recently left and they realized looking at the nearby charts, that Armin isn't cleared to leave the ward by himself. So then there was a real flurry of activity! Several nurses went running around looking for him. One went down to the main entrance to see if he had left the building. Soon after, the nurse who helped with the boot (who Armin knows fairly well) recalled that he had said something about the gym, so she looked and found him there.

Armin's smiled while sheepishly recounting to me, "I thought it seemed reasonable" and added "They said the gym is locked and I have to wait for Rachel" (his physiotherapist) "What good is that going to do me? She's not here right now". What's a 19-year-old guy to do once he's had supper at 5pm and desperately wants to get strong enough to leave rehab? Go to the gym of course!

Last night I took him to IMAX and supper at a Mexican restaurant. He enjoyed both. It was a good break because even if the staff here are great, the room gets pretty monotonous. In the upcoming days, Armin is getting a couple of visitors, which he always greatly looks forward to. This morning's team meeting of the staff here, still has Armin scheduled to be discharged at the beginning of May.

Update April 3, 2024:

Armin and I are both tired now at suppertime. It's been so busy and so many changes the past three days, that it feels like we've been through a packed week already.

Here are some of the highlights: In Occupational Therapy, Armin has made some excellent improvement in cognitive tasks around planning. It is very interesting to see that happening incrementally over a few days, and suddenly being different. Armin's OT, Don, has had him doing a variety of activities, but one that they have been working on daily for about a week, is assembly of a complicated Lego model of a Starwars battleship. Armin is still much slower than normal but here's what has been changing: At first he had trouble selecting all the pieces needed for a given step, before he would start assembling them. He might get confused and forget to collect some of the parts. He might skip ahead to the next step without fully completing the step he was working on. He often seemed uncertain whether he was properly finished a step, or unclear about what to do next. Now, he is a bit faster, but the important part is that you can see it's just WORKING: He is more structured about grabbing all the needed parts, then assembles, then clearly knows he's finished that step, and smoothly advances to the next step or the next page. It just flows. This also results (oddly enough, to me) in improvements in Armin mimicking fine motor skills like various finger gestures.

Other work he's done with OT has been around greater independence for bathing, washroom, dressing etc and that's all going very well. He's so much stronger now with transferring from bed to wheelchair that they have cleared him off to do this entirely on his own. That is a huge milestone.

Physio this morning was fantastic, Rachel is so shrewd to watch carefully, push Armin JUST hard enough, and do it in a lively and cheeky way. Once in a while, so moves the goalpost and self-deprecates about having done so. She mixes up whether Armin gets a standing break or a sitting break. Today, Armin was again "walking" in the hallways by using the two-wheeled walker and hopping on his uninjured leg. She ramped up that activity by hanging two seven-pound weights on the walker frame and having him wear another six pounds on a vest. Then periodically she would get him to double his pace for a short section. To keep him standing tall and looking up, he had to be calling out numbers on door signs and small tags they decorate the walls with, telling her all the blue items they passed, etc. After that they moved on to having Armin hop backwards with the walker. Then we moved into the Physio room and he had to go from sitting to standing ten times without using any arm support. Now stand up and play catch with a beachball . . . centered at first, until the start tossing it so he has to reach off-balance. Now try the same movements with a balloon and badminton rackets. Today was the first physio session where Armin remarked a few times afterward that it had really pushed him and really tired him out. . . like a great session at the gym (not to excess).

We also took a wheelchair taxi to a clinic near UofA for a swath of x-rays and a consult with Armin's surgeon Dr. Glasgow (in photo with Armin). Again - moving along superbly. There are already signs of new bone growth on the x-ray, which was not expected until further down the road. Armin was hoping to get clearance for full weight bearing on the broken leg and foot. While this didn't quite happen and is likely in 2-3 weeks, he did get upgraded to partial weight bearing, so even that will help with Physio. Starting to bear weight spurs healing so it's important to get that going.

Also this week, we got his first real outing booked; Imax this weekend. We've got the wheelchair parking pass finalized and issued (the process is the pits - do not recommend). And Armin has had some wonderful visits with friends, both by video chat and in person.

In news that took a bit of a downturn, his roommate was moved to another room. This is a downturn because the new roomate is louder. There is an air mattress making an annoying noise all night long, that the nurse optimistically positioned as "white noise". And the TV runs all day. It's rather amusing to read the Alberta Health website guidance about how one should attempt to get rest despite the acknowledged loud and disruptive nighttime circumstances of hospitals. Makes me wonder how much we would save - fully private rooms cost more to build, but poor rest is a certain contributor to longer stays and poorer outcomes.

Armin is currently expected to leave Glenrose around the beginning of May and join us in Russell for a lengthy period of continued rehabilitation. Today we made a list of five favourite meals to incorporate into his first couple weeks back home.

Shannon

Update March 30, 2024

Oh boy! I apologize. I didn’t realize I had let so many days pass by with no update. It’s been a busy week. Ansel and Marcus joined the rest of us out here for spring break. They brought Kirby as well, which has been wonderful. Armin loves Kirby and has not seen him since the beginning of January. There were many hours of snuggles in Armin’s bed.

Armin continues to be stronger every day in Physio. Throughout the week, he progressed out of using the Arjo, and to a standard aluminum walker. By Thursday, he hopped with the walker, almost 100m through the hallways. This required several sitting rests in the wheelchair, and lots of arm strength. One of the biggest challenges is lifting and kicking forward the broken right foot. The airboot is heavy, it’s grips sticks to the floor, and the thick sole makes clearance difficult. There is follow up with the orthopaedic surgeon this coming week, to see if weight-bearing can start on that leg.

Everything has a knock-on effect: wearing the air boot seemed to set off painful and prolonged swelling in the foot. So then we are to elevate his lower leg. A week or two of that, and the hamstrings are shortening, so now he can’t properly straighten out his leg. This is one of several examples.

Cognitively, Armin is a teeny bit more like himself each day. He gets a little quicker at some of the abstract thinking questions he does in Occupational Therapy. His conversational comments get a bit more detailed and occur more voluntarily (versus only in response). The tiny facial expressions or verbal expressions that we are used to, creep back in. On Thursday at OT, Armin was working on a Lego project and started softly whistling. Just a couple notes, but there it is again. Also new this week, Armin started to again be interested in his cell phone and getting reconnected with friends and family through video messages, phone calls, and texts.

It all feels like watching someone check through and turn on a huge plane or ship that has thousands of switches. One by one. . . click. . . click. . . so many small but necessary connections coming back online.

Today I had a lurch, seeing that something seems out of alignment with Armin’s pelvis. There has been no sudden event, but I think this is new. The nurses change three shifts a day, sometimes others help with showers etc. so it might be easier for them to not realize it’s a change. But I have been here throughout and helping with lots of in bed adjustments, dressing, etc. I’m sure I would have noticed the asymmetrical protruding bone if it was like that before. There’s a consult request out to the on-call doctor.

The week has gone quickly. On Wednesday, all of the rest of us had to drive to Calgary to an Austrian Embassy appointment that had been planned since last summer. My sister stayed at Glenrose all day to help Armin. That was wonderful. I would not have felt I could leave for 14 hours without that support.

All other nights, we’ve gone down the to atrium and had family supper. This is always a second supper for Armin. And while he is getting more food, as well an improved mix of healthier food, here at Glenrose, we are also supplementing daily so that gets all he needs to rebuild muscle and mind. Eating together at a table is welcome normalcy for each one of us.

Last night, the DeGroots: Marley, Jasper, Paxton and his girlfriend, Leah, joined us for supper, bringing delicious homemade lasagna that Leah and Paxton had made. A very nice evening together.

It’s still 22.5-23 degrees Celcius in the room all the time. They’ve had Maintenance here at least four times. This last week’s weather has been icy air than the prior week, so we haven’t gone outside very much. That will change soon.

While Armin’s situation improves day-by-day, so too, does that of the guy who caused all this destruction and grief. On Monday, March 25th, the court gave him opportunity for bail:

in this case, the bail actually has to be paid as a deposit.

It’s $500

There’s also several conditions, such as:

not allowed to drive without a valid licence (yeah, same thing he disregarded in the past)

not allowed to be away from his residence between 10pm and 6am (yeah, same thing he disregarded in the past).

And really toothy conditions such as requiring that when he’s away from home, he must carry a copy of his Release Order with him (an electronic copy is ok - how beautifully convenient!) OR he doesn’t even have to do that if he has one piece of photo ID on him!

If you’re in the vicinity of Fairview, AB, you’re at risk of being killed or maimed. I don’t expect any meaningful criminal punishment for the accused. But one might hope that once someone has caused such serious harm, any reasonable judge would have some interest in protecting the public while the case is before the courts.

Shannon & Bernhard

Update March 24, 2024

Yesterday, Armin’s Physio session was excellent. Different staff since it was Saturday, but as with the others he’s met, so skilled. Really astute in watching him, pushing just hard enough, and painting the path for him of what will be expected on Monday. Armin did ten reps of pushing himself up to standing from the wheelchair into a walker frame (with staff flanking him and adding support and assistance). He was able to stand for generally increasing periods of time from 10 seconds to one minute. He also used a device called an Arjo in a supported stand, to take small hood forward on his left leg.

Sundays are a day off at Glenrose. Ansel, Marcus, and Kirby arrived last night, so we spent the day together.

This morning started off with some excitement. Just before 7am, Armin got out of bed. Part of me wonders if this was cosmic insistence he’s going to get going on his own two feet, minutes before he crossed our six-week anniversary of the accident.

We both had on-and-off sleep from 3:30-5:30 due to disruptions from Armin’s roommate, then staff were in briefly checking on Armin at 6:00. I had finally drifted back to sleep around 6:30 and woke up quietly just before 7:00, uncertain why. I looked at his bed just arm’s length away; it took a moment to process that the mattress was empty. I suddenly realized Armin was silently sitting on the floor by my feet. Cue flurry of activity from me and the nurses to get him lifted back into bed.

Armin had needed to go to the washroom and couldn’t find the call bell - the corded remote hangs on the mattress in constantly changing locations and lengths and he couldn’t see or feel it in the dark. He decided to go for it himself (told me “it was like a mission in my head”). He managed to pull himself into an upright position, scootch down the bed and out the bottom corner past the lower side rail. He must have gotten fairly upright only to slowly and silently crumple beside my feet. He didn’t cry out and he didn’t bang anything on his way to the floor.

There was a lot of checking over today, but his mood and pain seem normal. He was upset for about fifteen minutes immediately after it happened. He had temporary shooting pain in his broken foot from attempting this excursion, this doesn’t seem any worse than normal. Staff were concerned that this episode could be a sign of disinhibition, which can be quite normal in brain injury (you don’t have the normal signal to check certain ideas). I’m not so sure it was that, versus Armin’s incredible determination to keep making forward progress. We’ll see.

Today while we were going around the facility in the wheelchair, Armin really wanted to do some more supported stands, so Ansel and I helped him with this, similar to what Physio has been doing with him on Saturday. After supper when he was ready to move from the chair back to the bed, he seemed so much stronger than 1-2 days ago, that Bernhard and I decided to try helping him stand and pivot on his left leg instead of calling the nurses to use the power lift and sling. This method of standing transfer had not worked when Physio and OT tried it with him on Thursday. Now on Sunday, it was easy. I don’t think he’ll need the lift for more than a couple more days.

Armin so enjoyed snuggling with Kirby today. Also this afternoon, the twins played a video of words of encouragement, prepared by staff and students at Major Pratt. Armin loved it and it sure brought tears to my eyes. If you’re reading this and you were part of it, THANK YOU! He’ll be rewatching your loving, enthusiastic energy.

Update March 22, 2024:

Armin has been at Glenrose Rehabilitation Hospital since suppertime on Wednesday the 20th.

So far we’ve been really pleased with the staff. They are kind, engaged, and they have more time to connect with patients, than in the neuro ward at the hospital. Armin has met the Physiotherapist and Occupational Therapist who he’ll be primarily working with. They both seem excellent - just the right balance between watching very carefully for pain or weariness, pushing enough to get progress and doing it with sincere engagement, all while being very alert to everything impacting progress.

There have been three incoming assessments where Armin was stronger than the staff expected (from the notes they had read). Although Armin continues to improve daily, it seems like this mis-match in expectations is more due to what is/isn’t included in those notes, than being due to Armin making any particularly large improvements in the past few days.

Yesterday, Bernhard and Tesla went shopping for a brunch of clothes and a pair of shoes that would be suitable for Armin’s current size, strength, and activities. He’s set.

Last night at suppertime, Armin decided he wanted to sit up over the side of the bed for eating his meal. He wouldn’t yet have the strength to sit unsupported that long - especially with the corrections required to stay balanced on a foam mattress. So Bernhard and I sat flanking him and put our inside arms on the mattress behind him, crossed in an X. This was enough of a “frame” both side-to-side, and from behind, that he managed the full mealtime very nicely and could correct his own posture without getting far enough off-balance to tip over.

What was wonderful last night was that Armin was able to have a shower, and with equipment that didn’t cause him horrible pain. The staff definitely found it odd that I had several very specific questions about the shape and firmness of the support surface. They ended up deciding it would be easier to just show me. Seeing that set-up leaves me wondering WHY the neuro ward had such a painful, hard, platform. Here, it’s a narrow simple stretcher with hydraulic height adjustment. Inside it’s lined with a vinyl-encased soft foam pad that has a drain hole in one end. Easy-peasy. No suffering in a rigid inclined backrest with his broken pelvis. This padded liner has flexible side-walls so sliding the patient between bed and stretcher is smooth. No need to sit in a painful commode chair in the shower. Armin loved it - second time with a real water cleanup, in five and a half weeks. He also enjoyed that his nurse has a beautiful singing voice and sang “Shallow” while they were helping to wash him up.

There are still issues with facilities and noise. Armin is sharing a room with an older man who had a stroke. His neighbour is in pretty good shape, which results in lots of loud, long assessment conversations. It also leads to regular disruptions day and night, of staff rushing in while the bed alarm is blaring away because this man has gotten up to go to the washroom and they don’t want him doing that unassisted.

Tip for anyone hospitalized in a larger centre these days: make sure you have a communicable disease/infection. . . that seems to be the path to getting a private room and quiet rest space. Kidding / not kidding.

We’ve been unable to avoid over-hearing and over-seeing all that goes on with Armin’s roommate and it seems like a lot of his current care/precautions are overly-conservative and policy-driven, rather than being personal to his current condition. This man continued living in his own and attending work for two weeks after his stroke, until his co-workers suggested a few things seemed “off” and he should go to hospital to get checked out. It’s not that he doesn’t need help, but the ban on letting him get up to go to the bathroom independently seems like quite the intrusion on his autonomy. While the noise is unfortunate, he’s a well-read and intelligent individual, so it’s been pretty interesting to hear what he tells the various health workers.

Staff are getting better at closing the door to keep down hallway noise. We try to have one of us sit in the room to protect his sleep, when he’s having a nap after lunch. Both here and in the hospital, there seems to be uncanny “nap radar”. A steady stream of traffic, even if the time of his daytime sleep isn’t consistent. Today, for example, there were seven or eight noisy disrupting events in 45 minutes of napping. (That’s counting a loud 30-minute conversation as “one event” within the list and it’s also counting that I was out of the room for 30 minutes so could have missed others).

The hospital diet is surprising on multiple fronts. Good stuff includes: the soups, sandwiches, and cooked entrees all look and smell tasty; the variety in the menu over the week is considerable; the number of choices people get on the daily menu gives flexibility; and they have an incredible ability to cart food all over the facilities and get it into rooms HOT.

The less complimentary side of it is seeing how convenience (and perhaps cost) result in serving some foods of questionable nutritional value. . . especially for people needing to heal and improve health. This is not to say we are *particularly* clean eaters at home, and we definitely get our share of junk food and fast food. We also eat the foods listed below. . . but not several times daily. Here are some of the things that I am surprised to see hospitals serving with regularity:

• sugary flavoured yogurt
• Processed cereals
• Refined processed breads, including syrupy breakfasts multiple times weekly.
• Factory packaged muffins that are up to 50% sugar
• Nutrigrain bars
• JELLO pudding cups
• Canned fruits in syrup
• Processed cheese slices
• Cookies for snacks (daily)

What seems to be missing includes:

• no meat for breakfast (ever)
• A few mornings a week with no options for eggs
• Fresh fruits and vegetables are almost never served or are in toddler-portions.

Also consider that this is Armin being served the “high protein” diet after we discussed with two dieticians, our concerns that he’s being under-nourished.

Even though Armin is eating a lot less than normal due to lower activity, we are still supplementing food daily on top of the quantity deemed suitable by hospital dieticians. In a fairly typical day, this probably includes something like:

• considerable quantity of additional whole milk that we’ve brought in (even though we also order and have previously received triple the small cups the hospital normally specs)
• couple more eggs
• one or two servings of bacon
• one avocado or a small basket of berries
• usually around half a portion of supper, of whatever we are eating, shortly after his hospital supper.

If I haven’t mentioned in an earlier update, it sounds like Armin will be here at Glenrose for perhaps two or three months. We’ve been so lucky to have so many friends visiting Armin, both at UofA, and here. Special thanks to Douglas for all the days he’s been able to spend with Armin - a photo of their fun below

Shannon and Bernhard

Update March 20, 2024:

Armin is killing it. He was assessed by Glenrose rehab on Tuesday and Thursday of last week (March 12th and 14th), and on Monday this week (March 18th). He is ready.

They put him on their official “waitlist” on Monday the 18th. We got word the next day, that he will be transferred Wednesday, March 20th.

This is a completely unknown world for us, so for now we are thrilled at the step forward, and bolstered by several comments about the facility’s top-notch care.

Yesterday morning (Tuesday), Armin has another 20 minute session with Physio and OT. This was his third session in the 10 days in the neuro-surgery ward. In the later part of his ICU stay, he was also getting support from OT (Occupational therapy) and Physio, however they came daily, separately, for 15-20 minutes each. In yesterday’s session, Armin had much more core and arm strength than a couple days prior. He was able to use his arms to push his trunk up off the mattress to shift into more comfortable positions when seated over the side of the bed. In another big step forward, they helped Armin stand up in a walker frame. March 19th is the first time he has been upright since February 11th. He still is not able to put any weight on the broken right leg and foot, so was supporting himself with left leg only and arms on the walker frame.

He continues to have a fair bit of pain in his right side, mostly his hip and his foot. Pelvic pain seems to be less now.

Mentally, his thoughts are way less scattered. He can track and contribute to conversations better than he could before. The Physician’s Assistant (who works Monday to Friday) was astonished to see how much Armin improved by Monday, versus when she had seen him on Friday. His long-term memory seems largely intact, but there are issues with recalling things like email account passwords. He can start and stop videos we cue up, use buttons to adjust his bed, and simple things like that. But he can’t properly use his cell phone independently and isn’t interested in checking messages and such.

Last night was another big milestone. We took Armin out to supper at Earl’s, right across the street from the hospital. He was happy to go out. We went early and sat on the quiet side of the restaurant. Armin remarked about having more of a sense of normalcy. Unfortunately a pretty raucous table came in shortly after and sat nearby. We could see Armin was getting uneasy and shortly after that, he told us he felt overwhelmed. To help manage this, we set him up with noise cancelling headphones and a Top Gear video. Armin self-managed starting and pausing the video as-needed, removing the headphones sometimes. It dimmed the boisterousness just enough. When our meal arrived, the concentration that takes, gave him calm from the surrounding noise. He ordered a favourite: ribs with warm potato salad. He can feed himself - just a little slower and some of the utensil manipulation is a bit awkward. In another surprise, we had ordered a sushi appetizer and I asked Armin if he wanted to use chopsticks or his fingers. He chose chopsticks, and could use them properly with his less-active right hand.

Also yesterday, we were able to connect with the doctor who looked after Armin’s care the first week he was in ICU. This compassionate, engaged man was instrumental on our journey. He had tried finding us one other day when we had Armin away in the Broda chair, so it was wonderful to meet yesterday. He was amazed to see Armin’s progress. He also encouraged us to come back to the ICU if it wouldn’t be too emotionally-overwhelming. He really wanted the rest of the staff to see Armin themselves, even though he’s shared a couple of written comments with them. We were happy he suggested this; Bernhard and I had talked about doing this, but didn’t really know if it made sense given the hit-or-miss nature of the staff schedules, how busy they are, and so forth.

With that encouragement, we went back to Armin’s first ICU ward, just before we went out for supper. It was great to see several of the staff who had cared for Armin. There was lots of congratulations and words like “amazing” and “fantastic”. Armin acknowledged that it felt a little strange to have so many enthusiastic people who are strangers to him, greeting him and chatting.

We really wanted the staff to have that “win”. Some people leave ICU under a sheet. Some people leave there still in pretty serious condition and many times the staff don’t find out what happens in the rest of that story. That must make it challenging to keep going, keep caring, and keep believing. When we turned Armin’s chair to leave, we could see down the longer hallway of the ICU, and noticed how many heads were popped out of doorways and around screens. So many staff members who had not approached us to say “hello” because they had never been assigned to Armin’s care directly, but all had heard of his incredible progress after such a grave condition, and all wanted to see for themselves.

Shannon & Bernhard

Update March 16:

Tomorrow, it will be five weeks that Armin has been in hospital. It feels long and quick, all at the same time.

We expect Armin will be transferred to Glenrose (rehabilitation here in Edmonton) in the early part of this coming week. Can’t wait. He has improved further even over the last couple of days.

He has much less of his extra-fast mumbling speech. When he does have something to say, it follows a conversation more normally, instead of phrases that quickly hop from topic to topic. His facial expressions are more connected to conversation. He teased me at supper when I wasn’t following him, “connect the dots”. He has also done quite a lot today to feed himself his utensil grip is awkward and I feed him the soups, but he is able to get food into utensils and into his mouth with it mess and at decent speed. Right now, he favours using his left hand for this (he is right handed).

Armin had a great day with lots of visiting time with Adrielle, Douglas, and Owen. We took him out for a field trip this morning, to the nearby Asian grocery store (same as yesterday).

Now that Bernhard is here again, we can do a lot more together, to help Armin. It’s easy for us to get him into the sling, and transferred between bed and chair using the lift. We work together to help him practice sitting over the side of the bed, as we’ve seen OT and Physio staff do with him. Having a second person around makes all the difference when he slides in the chair and needs to be scootched up again.

Update March 14:

Armin had a decent day overall. He loved having friend, Kendi, visit. He was able to get out of bed into a Broda chair he wasn’t just instantly sliding out of. And in the chair he started doing repetitive exercises to sit very upright forward of the backrest, rebuilding core strength. He was also reassessed by the Glenrose staff who were last here on Monday, with things still looking like he could start rehab next week.

The middle of the afternoon was pretty sad for a couple hours. Armin was distressed and inconsolable, saying, “what did I do to deserve this?” Indeed, there is no answer that makes this ok for our wonderful 19-year-old son.

Update March 13:

Armin did great in Physio today. He was able to sit a bit stronger than Monday, and was able to lift his legs off the floor, when sitting over side of bed (usually with some upper body balance support during the leg lifts). He has expressed grateful appreciation a couple times, for now being in a quieter room.

I want all of you to know how overwhelmed and deeply thankful our entire family feels, for all the support we’ve had, ongoing from so many, since February 11th.

This care and attention has taken so many forms. Contributions to the Go Fund Me, or e-transfers, of course. Gifts of comfort and practicality including home-cooked meals (both in Edmonton and in Russell) , restaurant gift cards, groceries, coffee gift cards, transportation help for people and items, Uber gifts, blankets, pillows, sleep mask, games, magazines, a Nintendo Switch for Armin, wine for frazzled parents, help securing some great give-away mobility aids on Marketplace, the list goes on and on.

We’ve also had an absolute army of helpers, clearing a pathway for us and making it easy for us to put more care and attention toward Armin. This has included help with: getting his Peace River hotel room packed up that morning and securing his possessions, booking flights for Olivia and Quinn, picking the girls up at Edmonton airport, delivering food, looking after Tesla, looking after Kirby, checking on our house, setting up and operating the Go Fund Me (including getting the word out in many ways and now sharing my regular updates that way as well), picking things up, dropping things off, going to stores with lists of things we needed and carefully choosing through items to try to make everything just right. We are a very, very lucky family to have so much goodwill sent our way.

Throughout it all, the real core are your thoughts and care that back all of these tangible supports, and carry on so much beyond that: daily manifestations and prayers, Facebook comments, private messages, emails, texts, phone calls, short video messages, and many in-person visitors. Sometimes it can be overwhelming - but only in the very best of ways. We really feel that strong base of everyone’s love and concern flowing through all these days. And it is a real joy to feel your happiness with each small step of process. Our lives have been enriched by meeting so many wonderful people, and your sharing of some very person stories.

Thank you all. No wonder we have always called him “Charmin Armin”. It’s seems he’s charmed many of you, as much as he’s charmed us.

Shannon

Update March 12:

Good evening Everybody,

TL/DR: moving to the neuro ward was horrible. We have a survivable solution now.

The past few days have been pretty tumultuous in all kinds of ways that stressed Armin out and certainly aren’t supportive of any kind of healing. Things are better now.

Please keep in mind that in anything that follows, the staff are NOT the problem. We have met amazing people. But there are tragic, systemic problems with hospital facilities and how they operate. I know I’m not the first person you’ve heard that from.

On Saturday around midday, Armin was transferred from ICU, to the Neuro-surgery ward. We then started living through almost three days of hellish distress.

Armin was placed in a four-bed room, immediately beside the nurse’s charge desk at the front of the ward. This is the “main hub” for staff, equipment, etc. The room itself was so noisy. Armin awoke from a short nap, all wound up, immediately upset “Tell that guy to answer the question! Tell that guy to answer the question!” The room was filled with the sound of the nurse loudly attending the hard-of-hearing old man on the other side of the room. “Can you rate your pain on a scale of 1-10?” The following evening, this man took a call from his wife. Over the speaker phone, we could hear her remarking to him about how loud it was on the ward. She was surely not hearing half what we were (through the cell phone microphone).

We had left ICU with Armin just getting onto biting and chewing popsicles well, with an order entered from the doctor, which was discussed with me to be, “normal diet as tolerated, led by Mom, discussed with RN”. The plan was that this was supposed to have cross-over with slow bollus tube feeds, until Armin could transition into enough food by mouth to sustain himself and regain weight. Then boom: welcome to the ward. Orders cancelled. In fact, he’s not even allowed ice chips and popsicles anymore! Immediate actual experience with the patient, be damned Folks, we have a process to follow. He hasn’t yet been evaluated for a swallow test. And then we might need a camera down his throat. And oh. . . Sit tight until Monday because the hospital half shuts down on the weekend. What a disaster.

Next up on the list of delights, the noise near the room. What an unbelievable racket from the hallway. ALL. THE. TIME. and if that wasn’t enough, it’s a crescendo for about 30-45 minutes at shift change twice a day.

We do not begrudge the nurses and aides, their need to communicate clearly, sometimes loudly, and happily, with their colleagues in their daily workplace. But Armin certainly was suffering the inability to manage this hustle and bustle, due to size and location of the facilities.

Over the first couple days in the ward, I noticed he was having a harder time managing his pain. I suspected it was all the agitation from the noise. We have been advised that quiet rest environment is extremely important in recovery from TBI.

This was all after having been given a tour of the potential wards, by a patient care manager. Lots of chatting about how there’s no certainty but a request can be made for a private room. And the rooms are singles or doubles. And asking whether (if it was possible) would Armin prefer a window to the exterior wall, or the interior of the buildings. . . while I expressed doubt about the capacity to consider any requests. In the breath after being told about efforts to get a private room, I asked if being a neuro ward, there was risk of disruptive and distressing cries and hollering from brain injured patients. Oh. . . yes. . absolutely. That’s a great question and definitely can happen and she didn’t even think of that. She tried to ally that concern by explaining they put the loud patients in the private rooms. So much for the chance for peaceful rest by getting one of those. I feel like I didn’t properly take in the ward conditions, while walking along and working hard to listen, and engage with this manager. Lesson learned. It’s like taking a test drive with the car salesperson accompanying and chatting you up. You can’t properly evaluate the car. I had been advised I would “need to advocate” for Armin, by the very person these sorts of concerns get elevated to. Why tell me about what “we” can ask for, if nothing will be done about it? It felt pretty hopeless.

On Monday, Armin was unable to manage pain. He struggled all morning. He’s been on Tylenol only, since February 21st, and doing well. It didn’t help him at all on Monday and finally I felt like I had to ask that he be given Hydromorohone. I had previously expressed concerns that the two options available for his pain relief seemed extreme: Tylenol (pretty basic) versus a pretty potent opioid. Those concerns went unaddressed. There’s a lot of “we’ll ask” followed by no response because things are too busy. What we HAD gotten an answer on the prior evening, was that if it became necessary to administer the opioid, he could be given a half dose. So on Monday morning, express communication to confirm half dose at the time it was given. The Hydromorphone knocked him out all day, so he missed eating until evening, he missed going in a chair in the afternoon. Not a good day.

I was really taken aback how hard the half dose hit him, so undertook a detailed discussion with the charge nurse about pain management. I learned a lot. The discussion was all great. Until I accidentally discovered Armin had been given a full dose, despite verbal confirmation otherwise from the nurse administering.

Hopping back to Sunday, it was already clear that things were terrible on the ward, and there’s few options or capacity to improve anything. We’d been told Armin is now very stable and we are simply spending time, for an estimate of three weeks, until he’s ready for rehab. It was sure looking like a quiet room in the Russell Hospital would be a godsend. Natural light instead of a curtain encircled postage stamp that staff know contributes to patient delirium. We made calls and our community came through for us. Willing doctor, space available. Bernhard and the twins drove out to Edmonton abruptly on Sunday to help transfer Armin. Our intended plan at that time was to travel on Monday. I know this will sound absurd to some, but the circumstances were so desperate that you have to do what you can. We will do unusual and difficult things if it gives Armin a better shot. (Arranging transfer by flight or ambulance was predicted to take a week or more, hence the DIY version). I won’t go into all the details here, but we prepped with emergency plans and all kinds of supplies for the journey. We believe we understood the reasonable risks, the rare risks, and that such a move would likely shift the rehab location to Regina or Winnipeg. Please let your takeaway here, be that ward conditions are horrendous and I don’t believe he could have been ok and ready for rehab after three weeks in the ward.

Armin wasn’t able to get into a Broda chair on Saturday, due to switching wards. (He had been doing it daily in ICU for about five days and it’s important for development. He doesn’t properly fit the chair due to his height, but we managed). On Sunday, this also couldn’t get done due to staffing, I really worked on it for Sunday evening. That in itself was another problem. First, he was sliding out of this ward’s Broda chair five times in 45 minutes while we kept trying to readjust him and make changes to prevent slipping. The first time it happened, I was 25 feet out of the ward, on the way to the healing garden, and could not have made it back to the ward without the help of a passing-by employee who helped me shift Armin back up into the chair high enough to roll back to the ward. In trying the last repositioning, two staff members malpositioned the sling while one of the two discussed not knowing how to use it. As they operated the mechanical lift, armin was upset “ow, ow, or” as they crushed his private parts and I was telling them to stop, that they were hurting him. This happened twice while they insisted the sling was on properly and I insisted it was very different than ICU. They were going to lift the same way a third time until I said “absolutely not” and suggested all male nurses on the ward sample that experience with the sling positioned improperly like that. It is unbelievable to me, the lack of any intent to fix the cause of pain while a family member was standing right there. What happens to patients who don’t have that backup?!

If you need more convincing:

the ward standards are to change dressings every 7 days unless needed sooner. This doesn’t happen. I had to request it on day 12.

Patients who do not have the capacity to brush their own teeth or wash their own faces, don’t get help. Their family members don’t get any instructions about supplies and facilities.

Soil checks are supposed to be done every three hours. This doesn’t get done.

Repositioning to avoid bed sores is supposed to get done every two hours. Same story as above.

Orders for scheduled (continuous) dosing of Tylenol will get changed to “as needed” with no discussion to patient or family and when you realize that’s happened, it will be unclear who changed the order.

Your nighttime arm splint won’t be put on for the first two nights. When it does get used, it will be out on backwards, despite an instruction sheet hanging at your head, and large marker printing on the splint itself.

Many decisions about your care will be getting entered into the computer and periodically changed, from people who haven’t examined you and haven’t talked to your family. You’re a patient number, they have a chart. There’s a formula, or a standard.

This is what we have personally experienced. Your mileage may vary.

Heaven help you if you are in one of our first-world Canadian hospitals, outside of ICU, and don’t have one or two family members helping every hour that they can, while being constantly exhausted trying to fix problems or politely advocate for your basic care.

The resident who I spoke to on Sunday morning agreed that there was no reason for Armin to be hanging in the neuro ward and that the Russell hospital sounds like a good space for him. Some of the people who were back at work Monday, felt differently.

We agreed on Monday morning, to wait half a day while they looked into things. As expected, that stretched out to the whole day. We were assisted by an absolutely fantastic staff member, but the day closed with everything up in the air. We also discussed options like getting Armin out of the ward, and to an accessible hotel room in Edmonton. That solved inter-provincial issues, but introduced new ones such including administration of his blood thinner medication.

One of the most significant forward steps yesterday, was that because of our intended transfer, Armin was reassessed for rehab. They were surprised how much he has improved since last week, and think he will be ready for rehab in a week. This was important new planning info, as it made staying in Edmonton, make sense. Now, how to survive that week without Armin losing ground.

Magically this morning, someone got discharged from the window-side bed of a two-bed room, at the quiet back end of the ward. This has been a fantastic change in reduction of noise levels. It completely flips the equation, that the other problems are survivable. We can already see the improvement in Armin. He is way more calm, and he’s doing far less fast babbling when he speaks. Bernhard had arrived on Sunday evening, elated that Armin could now talk, but feeling like perhaps I had over-enthused how well he could communicate. It was a two-day babbling dip, due to all the racket and agitation. He’s back to how we have verbally, when he left ICU.

In the meantime, he’s getting stronger and can now turn kinda sideways in the bed. He can operate bed controls himself. And he started wiggling his toes, which had usually been absent.

Some of the funny or endearing things Armin has said recently include:

“Frankly that’s a lunch I would love to have”

“That sweet, sweet victory jam” about breakfast jam, while echoing the prior day’s joy in surviving the collision.

“I’d much rather go somewhere with Kendi and Taylor. Can she take the Cross Iron bus to get here?”

“That would be so nice, yes please” (when I asked if he wanted a short video from a friend)

“That’s unfortunate for us” in response to mom saying he and (co-worker) were in a collision in the truck in the way to work. “I know that. He did a fucking commensurate job” in response to me saying (co-worker) tried so hard to avoid the collision.

He also started singing within the past day. It’s just a couple lines per song, but he sings what he happens to think of (not music that’s playing).

Nina Simone “ it’s a new dawn, it’s a new day. . . “. And I carried on and he says, “yeah, that’s a song I know”

Then he started singing Bill Withers, Ain’t No Sunshine When She’s Gone.

Last night he sang a couple lines of The Hokey Pokey to Marcus.

We have been working hard to help him consume the hospital’s high calorie, high protein diet AND supplement with a significant quantity daily, of food we supply.

Things are back on track.

Update March 11:

Sorry Folks. There’s been a lot going on the past few days and I’m just too tired to write a proper update. I will post in detail within 48 hours. Really appreciate everyone’s continued care and support for our family.

As one quick thing: armin was able to use a wheelchair today (instead of Broda chair) and got outside for the first time.

Update March 8:

Armin’s big focus today has been speaking. We started the day with breathy whispers and the odd partial word hinting at voice behind it. We’ve ended the evening with some phrases having most or all words in “voice” rather than whispering. He’s still get in used to this and is speaking quickly, so I don’t catch everything that is “voice”, but our odds have gone WAY up versus whispering.

The kinds of things Armin communicated today include:

Early this morning telling me, “I love you”. It was in response to me talking to him about how every tiny thing must feel like “work” right now and that must be really frustrating. But that when he gets better and is up walking around and driving, he’ll have known REAL adversity and he’ll be unstoppable.

“So hot, take it off” (about the blanket on his legs). And when I apologized for not understanding sooner, he said, “it’s not your fault”.

“Hurts all the time. So frustrated, can’t explain” (followed by a bit of cursing)

“Pushing on my back” about the wheelchair recline and when we later asked if it’s ok to sit him more upright without worsening his pain, “I guess you can try”.

When Armin and I went on our “field trip” down the hospital halls, we checked out the vending machine, and I asked what drink he’ll choose when he can walk up and buy one, “iced tea or water”. (I did not list the drinks, he can recognize at fair distance)

When we wheeled back into the room, I asked if he wanted bedeck in bed. He answered, “grausig” which is German slang for “horrible” or “gross”. It wasn’t enough to say “no”. He wanted to be clear just how strongly wanted to stay out of the bed.

Does something hurt, Armin? Instead of saying yes, he answers “physically” to distinguish from emotional pain.

The nurses and therapists are always encouraging telling him the date and where he is and why. I don’t do a lot of this because I feel strongly that he KNOWS and sometimes it’s upsetting for him to be reminded how many days he’s been hospitalized. This evening, I was following those instructions, but talking from the angle that he and I had made it through another week. He said, “I know” but then seemed to think his answer had been brusque and added “It’s definitely helpful”.

To change sheets nightly, Armin needs to be rolled onto one side, then the other. Exactly how this is positioned and which side is first, depends on the staff. Tonight as we set up for it, Armin said, “This part always confuses me”. The roll is pretty painful on his right hip, so talking through the process more, helped him a lot.

When I was telling him again tonight that his rate of healing is amazing, he said, “I can’t agree”. Then we talked about perspective.

Tonight he was asking about his work. He loves it and he wants to get back to it.

The OT gal was trying to encourage Armin to limit to single words, or use more yes/no. There have been suggestions about those letter boards. Armin’s not having it. He continues to grind away with the whispers and now some soft speaking. The length of phrases have grown even throughout today. I think he feels like those other methods would be so slow that they are useless. He’s just going to keep at his preferred method until there is consistent success.

In other news, I can see his core and upper chest/shoulders getting stronger, just by how he moves in bed.

This afternoon, he ate a single stick popsicle - first time he’s had anything by mouth and it was a hit.

I’ll close for tonight with a glimpse of Armin’s state of mind. A colleague was visiting and commented how Armin’s co-worker in the truck, continues to be so torn up about Armin’s condition. I had replied that it is because of that co-worker’s efforts, that Armin has had the opportunity to be in the condition he’s in and making the progress that he is. Armin added in, “Sweet, sweet victory” to have us understand that he sees the two of them surviving the accident, as a team effort and a triumph. He beamed the BIGGEST smile when I understood after only two attempts.

Update March 7:

Another day, where by 4pm I’m thinking “did that happen THIS morning? (Because it feels like so much else has happened since).

All of his speaking is the breathiest of whispers and many times he is frustrated that I cannot understand because everything is just so LOUD everywhere. Even in the room - the two large air ducts seem very quiet, but there is a grill right between them that appears to be a speaker grille but pumps loud HVAC blowing sounds 24-7. I think they are broadcasting white noise.

He said “cold” this morning, and then said “yeah” when we asked if it was his legs. Guess who got one of those cozy heated blankets!

Shortly after that, I was leaning in very close, desperately trying to make out a phrase he was whispering repeatedly. He lifted his head and shoulders off the bed, and planted a beautiful, purposeful kiss on my cheek. Maybe even sweeter than all those bygone baby and toddler kisses.

Armin seemed to tire out faster in Physio today, but did better at sitting over the side of the bed, for the shorter length of time he could practice it.

It is very clear to me that’s Armin’s personality is intact and he has incredible awareness of what’s happened to him and how serious a setback this is. He definitely has a few very frustrated and teary moments each day where the anguish and weight of the grief rests very heavy on him. Today, he whispered “fuck” one time each in two of these short sessions of despair. In one spell, when I was telling him how hard he’s working and that he IS getting better, he whispered, “it’s not working”. He did seem to take comfort by hearing about how this requires a shift in perspective, and incredible patience.

Armin loved spending a few hours in the reclining wheelchair again today and we went through various hallways, as well as the Healing Garden. On our way back through the garden, a volunteer was playing piano. When we asked Armin if he wanted to pause, he whispered, “so beautiful” and we stayed.

On our way back to the room, I was telling Armin’s nurse about his dream collector car the “Datsun 380”. Armin whispered the imprint correction, “280 Z”.

Late this afternoon, we were able to understand “hurts all the time”, further clarifying with nods, that he has considerable frequent pain in his right leg.

Another highlight of the day was more conversation about his determination and the frustration he’s feeling. I was telling him that he WILL recover and get back to living the life he has planned for himself. He looked me firmly in the eye and said “Damn straight”. This had a bit more oomph behind it so I understood in hood second attempt. I am so in awe of his grit in the face of tremendous adversity.

Earlier this evening, Armin touched the dressing area of his g-tube and whispered to the nurse “how fast?” He wanted to understand steps and timelines to getting rid of it. It bothers him a lot but I think that is mostly psychological rather than physical discomfort.

After that, he repeated “gastric supply” MANY times until I finally understood the words. But I still haven’t figured out what he wants to know or tell us. When I asked if he was wanting to know what’s in the liquid diet, he shook his head clearly.

Armin is cleared to leave ICU and will be transferred as soon as the intended bed in the neurosurgery ward, is available. I am concerned about that. It’s a milestone in his progress. But it means moving into a ward where some patients are regularly making distressing noises at all hours. I’m being told this, while also being told that it’s especially important for TBI patients to have quiet sleeping facilities. And I’m being told that I will need to “advocate” for Armin. . . being told that by the person whom I right was supposed to be the destination for my advocacy. Still trying to figure out the operations here and hopefully he’ll move through neurosurgery and on to rehab, fairly quickly.

Shannon

Update March 6:

Today has been a new high for Armin. Outstanding progress (IMO). He is absolutely fighting his way back.

We’ve been successful getting his left arm straightener out enough for two nights in a row, to put on a foam splint to prevent shortening of his bicep. Sure enough, 6:30-7:00 he’s doing the arm lifts even with the splint still on.

Occupational Therapy came in at 8am in hopes of catching him more alert in the morning. Results were kinda laissez faire. She was trying to encourage Armin that the most important two words for him to learn to say are “go away”. I expressed doubts that direct push-back like that, isn’t really Armin’s style. He did a few things, but mostly looked around at me and three OT women like he either didn’t understand us, or thought we were weirdos all being so focussed on him.

After that, Armin was watching a couple short clips from one of his favourite shows “Top Gear”. It was an episode where the stars build their own electric vehicles. There wasn’t a laugh track and I was busy texting someone, when I realized Armin had a broad smile and was shaking his shoulders with silent chuckles, seeing the ridiculous-looking vehicle being rolled out of the garage. That was pretty awesome.

Mid-morning, Physio came in. Armin seemed to immediately recognize the same therapist who worked with him yesterday and treated the guy with a big grin and meeting the offered high five in a gentle way. During the session, he was able to sit over the side of the bed with his head much more upright than yesterday and able to use his core muscle to maintain balance or do small corrections for around 45 seconds or so, until he’s need help getting back into balance by support at his shoulders. While he was sitting, he was able to follow instructions to do high-fives with both hands, to the therapist, to me, and then to me with changing to fist-bumps.

In late morning he got transferred into the reclining wheelchair for a few hours. We were listening to music when I realized Armin was mounting some of the words to one of the songs. This was amazing. The sing was Kendrick Lamar’s m.A.A.d. city. When I remarked about this, I got a BIG smile from him.

After a while, he had an expression of discomfort. When I asked if something hurt, he softly whispered, “yeah” and when I asked what hurt, we hit today’s beautiful milestone: Armin whispered “my leg fucking hurts”. Sweetest words ever. He was able to confirm “yeah” that it was his right leg (with all the broken bones) and we were able to get him comfortable with a change in position.

Today was the first day Armin and I were able to go out of ICU without his nurse. We hung out in the Healing Garden for 1.5-2 hours.

He’s been trying repeatedly to whisper some other short phrase to me this afternoon, but I just can’t quite make it out and he shakes his head that my guesses are wrong.

Sometimes I feel funny sharing the minutiae. But I also feel like it’s important for everyone who cares about his well-being to see how hard he’s working to move things forward.

Update March 5th

As one measure of how far we’ve come:

In the first week and a half after the accident, Armin received seven units of blood and two of platelets.

He continues to actively work at making progress. He has been moving his legs lots - in bed and while in a reclining wheelchair.

Today for the first time, Armin was able to move his left hand to his upper lip, ear, and eyebrows, at different points throughout the day, to rub itchy spots.

When he worked with the Occupational Therapist, he was able to hold a toothbrush, guide it into his mouth and attempt to brush his teeth. We tried to get him to do purposeful gazes toward “yes” and “no” signs as a means of communication and that was not reliable.

Navigating this is very strange. So many basic movements or communications he cannot do. Yet there are also times when he overhears much more complex conversation and appears not only interested, but to be following.

Sometime this week, Armin will leave ICU and go to Neurosurgery ward. He didn’t have neurosurgery, but many things about his TBI (Traumatic Brain Injury), make that ward a good fit for the next stage in his recovery.

Shannon Neuhofer

Update: March 4

Armin had a more tired day, but still some good things happening.

Best news was that his tracheostomy got removed; we could see it was bothering him. They also removed the arterial line that he’s had the whole time in ICU. We are expecting he will get moved out of ICU tomorrow or the day after. Not sure what ward he’s going to; there are a couple under discussion

He had Occupational Therapy, Physiotherapy, and rehab evaluation all working with him today. When testing sitting over the side of the bed (still supported), he was able to hold his head up on his own, so that, too, is another small but important improvement.

Update March 2, 2024: Great Success!

“I have a chair! I have a chair!” (please tell me you read that in Borat’s voice)

What an amazing day - Armin is absolutely powering through. Can hardly believe all the things we have to share from today.

Over the last couple days, Armin has been lifting and flexing his arms regularly (left much more than right). He’s had his tracheostomy plugged day and night, and he’s been on nasal oxygen so he gets moisture added.

This morning, as soon as he woke up, he was working that right arm. It is completely obvious that Armin is doing this purposefully, as exercise. He does a lot of it, at different intervals throughout the day.

Then we started with the ever-popular toilet humour. First an unnamed family member passed an audible fart. Armin immediately started smiling and laughing. There isn’t much of any sound when he laughs right now (maybe some breathiness) but you can see his shoulders moving. Bernhard immediately quipped that now we can blame all such things on defenceless Armin, and Armin laughed even harder. We got into quite the session of joking around, revisiting funny videos and memes, and just loving that big, broad easy smile, and his chuckles.

At one point when Armin was raising and extending his arm, Bernhard quipped, “Who likes to masturbate?” (a joke from the movie Patch Adams, where Patch incorrigibly teases a patient who has his arm frozen outstretched over his head). Armin immediately understood the phrase and the reference and started shaking with laughter faster than any of the rest of us. These are important signs of cognition when we have very little idea how much damage has been caused by the severe TBI.

Next in our morning, the respiratory therapist decided to see if Armin could tolerate dry oxygen supplied through a smaller and more comfortable nasal cannula. That went well.

By mid-morning, three members of the ICU nursing staff helped position Armin sitting upright with his legs over the side of the bed. First time he’s been in a posture like that since February 11th, and you could sure tell his head felt heavy. They carefully supported him in that position for 7-10 minutes before giving him a break. Then the hunt was on for a reclining wheelchair.

A chair was found and Armin got moved into it around mid-day. At first, we stayed in his ICU room, giving him a chance to acclimate to the new posture, able to sit closer to these wonderful windows and see a little more of the world.

During the afternoon in the chair, lots of things kept moving. Armin kept going with his arm lifts; we can see that he often does movements right to the point of pain. We can’t tell if the pain is from tightened pectoral muscles, or chest pain for his sternum fracture. Either way, he is in control and keeps pushing that threshold. Bernhard and I had the nasal cannula off him for five minutes to do a shave. The RT happened to come in to check at the end of that, saw his oxygen levels and said, “let’s leave him like that. This is great”. So today, first afternoon with no supplementary oxygen. Armin also got the last of his stitches and staples removed (the largest incision in the hip, for putting the IM nail into his femur). He started to wiggle his trunk a few times, which is new movement, and was moving his legs very slightly.

What was also very moving but on the emotional front, was that we talked directly with Armin in greater detail, about all the support our family has received. We have already shared many messages with Armin over of these past days. But he didn’t know anything about the Go Fund Me page, the e-transfers we’ve received, nor have a fuller understanding of the huge number of messages of concern and healing that have been sent our way. His face crumbled and he started crying. He was so completely overwhelmed with knowing so many people are on his team.

After giving Armin an hour or so to get used to the chair, we moved to the Healing Garden. This is a beautiful atrium on the fourth floor at the hospital. It is just gorgeous. Many big plants, a wonderful wooden sculpture, huge windows, and the whole place smells beautifully of fresh plants and flowers. Luckily while we were there, young children were hopping around and laughing nearby, and many of us know how much Armin has always connected with kids.

Shortly after arriving there, Armin’s friends arrived to visit, having travelled up from Calgary. Taylor, Ashtyn, Tarek, and Adrielle have all visited before, but I think Armin knocked their socks off, seeing how he has improved since they last saw him. We had a lot of fun visiting there, because friends always know best how to get the big smiles and the chuckles going. Admin’s one-to-one ICU nurse, Denis, was nearby and keeping a careful watch on him the whole time. After a nice long visit, we could see that Armin was getting tired, so Denis took him back up to ICU, into bed for the remainder of the day.

Today has been so happy, with so much progress, that it’s almost hard to acknowledge that there will be low days and other challenges ahead. It feels like we’re on the ski jump, ready to fly. This is the weirdest account I’ve ever seen described of “a day in ICU” and we know Armin has so much more in him.

Update: Feb 29, 2024:

We know the roller coaster will continue, but please celebrate today’s joy with us.

Armin smiled broadly a couple of times when viewing photographs of himself and a friend. And he actually chuckled, slightly but unmistakably, to Bernhard’s joking around.

Today he was able to move both arms many times - probably more times than any other day. He moved all fingers on both hands. He even moved both legs very slightly at one point.

He has been able to indicate he does or doesn’t want music played, or is or isn’t in pain, either by squeezing our fingers to yes/no questions, or once in a while, with the tiniest of nods or head shakes.

He still is on respiratory support that they are hoping to move even closer to transitioning off over the next several days. Also hoping to get him out of bed and into a chair fairly soon.

The mountain Armin needs to climb isn’t smaller now, but these are such important steps to get him on his way. We of course hang in every tiny twitch, so eager for more and faster. But when we reflect that exactly two weeks ago was the utter despair of being told he wasn’t expected to survive, this is all pretty incredible.

This evening, a nurse came in to help Armin’s day nurse deposition him. She saw the hamburger balloon in the corner of the room and excitedly asked if he was the same patient from bed one in the other unit back then. She couldn’t believe the change and was so happy for him and us.

Go Armin!

Many hugs and wishes of gratitude continue, from our family, to all of you who have lent support in any way that you can. It has helped us immensely in all kinds of ways, to feel so lifted and supported by a broad community. Thank you isn’t enough.

Shannon & Bernhard Neuhofer

Update Feb 27: A couple of excellent things today:

In the “not going backwards” category, yesterday afternoon they decided to test Armin for C.Difficile to rule out a couple things. They thought the results would take a couple days. Thankfully results were back in less than 24 hours and thankfully are negative.

In the “beautiful progress” category, Armin passed the tracheostomy test this morning. This is where they provide supplementary oxygen at the nostrils, deflate the ballon in the throat, plug the tracheostomy, and try to get the person breathing filling in their own through nose and mouth, able to deal with oral secretions, etc. It can be taxing to get those muscles working again. The goal was to get the transition happening and have him breathing for an hour, maybe two if all going well. Armin made the transition this morning and killed it. He was monitored that way for 2.25 hours and it was switched back into the tracheostomy at that time, so he could be transported for a leg x-ray. They will continue alternating between trials like this, and rest periods, until they can switch to the tracheostomy being plugged full-time (which precedes removing it).

Armin tried speaking to us yesterday and today during these tests. We could not understand and are hoping the words are coherent, when he gets more opportunity in the coming days.

The doctors are excellent and are always measured and reserved in their reactions, or especially in their prognosis. But we overheard one speaking to a colleague today and describing Armin’s progress as “amazing”.

We’ve always known Armin is an amazing son and brother. On one hand it seems like we have micro improvements. On the other hand it seems like he’s improving very rapidly. We are grateful for these early encouraging days and expect there will be harder days ahead. But please celebrate these important first steps with us and continue to send healing thoughts.

Shannon & Bernhard Neuhofer

Update: evening Feb 25th

Our eventful day has passed. Olivia should be able to avoid needing emergency back surgery in Alberta, and will continue with her medical care in Austria.

Armin has rested well today. He was not ready for the tests they did to try to get him off ventilation. Wakefulness was similar to recent days. He did have fairly strong resistive arm movement today with Bernhard.

Shannon & Bernhard Neuhofer

Update #3 from Shannon & Bernhard: a turn of events with Olivia (Feb 25)

If things weren’t tumultuous enough, I (Shannon) am now in emergency with Olivia. Bernhard is up in ICU with Armin.

Olivia has been receiving frequent emergency and specialist care in Austria over the past few months, for a herniated disc they are trying to avoid doing surgery on. She had an urgent consult to fly to Edmonton (had to travel business class) on Feb 16th, based on Armin’s dire condition at the time.

Today, there has been a sudden worsening of her condition and her neurosurgeon says she needs to be examined by a neurosurgeon here ASAP.

Update 2 from Shannon: February 25th.

Armin was moved to a different room last night. It’s still ICU and still the same care team, but the differences are:

the more stable ICU patients go here, as it’s a smaller pod that is physically at some distance from the rest of the ICU.

There are beautiful full-length windows. His bed can be turned to face them during the day, so it’s the first time in two weeks, that Armin has seen the sky.

As for his condition, he’s still receiving respiratory assistance and has mild pneumonia right now. He opens his eyes for long periods of each day and can track faces and objects a fair bit. Armin is moving his arms spontaneously once in a while, including index finger movements. All of the incisions from his surgery are healing well, sutures and staples expected to be removed over this coming week.

We really appreciate everyone’s continued care of Armin.

Update from Shannon, February 21, 2024

We are overwhelmed by everyone’s support in so many different ways. We are so thankful for everyone’s connected support for his recovery. He is working it as best he can.

A week ago, they did not expect Armin would survive the following 36 hours; he carried through. Last week, the doctor was very surprised when Armin then had some movements in response to pain. His movements are not normal, and it’s a bit up and down each day. But overall, he’s very slowly improving. On Monday, he opened his eyes for the first time and now keeps them open for fairly long periods of the day.

Armin has a tracheostomy and minimal respiration assistance. He will be having a small surgery this week for feeding tube. The incisions from his surgery are healing well and he hasn’t needed any blood transfusions for a couple days now.

We know everyone is eager for updates and we will do so again going forward. But the progress is very tiny. . . almost too little to notice day by day.

Thank you for caring for Armin and our family.

Original Feb 20, 2024

In the morning, on Sunday, Feb 11, 2024 Armin Neuhofer was a passenger in a serious motor vehicle accident. He and a co-worker were traveling to a worksite northeast of Peace River.

Armin was alert on the scene but needed emergency services to cut him out of the truck. He had leg pain, but was lucid for several hours that morning. Armin was taken to Peace River Hospital, thoroughly assessed, the flown to Edmonton. He was not responsive when his parents, Shannon and Bernhard arrived at UofA hospital emergency on Sunday evening.

At first his injuries seemed orthopaedic in nature: many broken bones including upper and lower right leg, right foot, and pelvis. Surgery was planned for two or three or more sessions. Surgery took place on Monday and went well, so all surgery was done and it was a long day. Unfortunately, Armin could not be woken up after the surgery.

Further tests have revealed widespread brain injury. It is unusual that he was alert with perceived “normal” cognition for such a long period after the accident, but we have been told that this type of injury can take around 12 hours to be evident.

Armin has been in a coma. His Glasgow Coma Score is poor. He appears to be out of coma since Monday, February 20 but remains unconscious.

At this point the future is very uncertain with a huge range of potential outcomes. Armin is receiving excellent care. We are grateful so many people everywhere in his life, love Armin and are keenly invested in his well-being. We know the connection between people can be a tangible and powerful force and we are asking for all of you to hold Armin and his healing in your thoughts. Whether in your mind it’s “prayer”, or “meditation”, or something else within your spirit, please find the minutes to actively manifest healing for Armin.

Armin has always excelled at everything he’s attempted. He went into this in the best condition physically and mentally. This will be the biggest challenge so far in his life and we are counting on his determination and resources to start getting things moving in a positive direction.

Any gift is appreciated and will go towards expenses incurred while the family attends to Armin's healing.