A Year Later…

As I hop briefly into the blogosphere, I feel like a bunny that’s been in hiding. Every waking moment you can find me hop from thing, to thing, to thing – my to do list multiplies before my eyes. I try desperately to find a sturdy rock to rest on, briefly, as I move onto the next obstacle in our way to recovery.

As soon as I start typing, I hear or see a request for assistance. I chuckle when I hear Mr. asking Siri, “What is the AQI?” 46 – It’s good even though the heat index is above 90. That’s HOT here for WI. We’re sitting inside by choice.

Ah…the word choice is a tough one to reconcile as I reflect on the past year.

A year ago, we were inside too – in the sterile environment of the ICCU. And, Mr. couldn’t breathe or eat on his own. The doctors couldn’t tell us the outcome of the life-saving brain surgery, except that it was successful in their books. Scary as hell.

I still shudder when I think back to that day. The scariest day we’ve ever shared. Mr. used his current pal, Siri, to call my cellphone to help. He wanted to be saved. So that embarked our family on saving his life and getting him back home to recover.

A year later, we’re still ‘recovering’.

Dare I say, “We’ll be recovering for the rest of our lives.”

The mystery of “Why?” did this happen to him/us remains unsolved. As the year anniversary rolled around yesterday, I re-read my journals, looking for signs. How could I have missed it coming? How could he have missed it? I’ve revisited that day so many times. Other than him being extra tired early in the evenings for a week or so before that day, life was ‘normal’. We took our regular 2-mile morning walk that day. He worked on his projects. He made us breakfast and a midday snack. His tray with the snack was never finished.

As we reflected on that day, I asked him what he remembered about it. He said, “The left side of his keyboard stopped working, then I fell in a crash after hitting my head on the printer stand on the way down.” No headache beforehand. It was a sudden location change.

Fast forward a year and each morning we greet each other with thanksgiving he’s alive and lately – we’re thankful he can sit up on the side of the bed by himself and low pivot to the wheelchair with my assistance.

The list of things he can’t do that he did before stroke still overwhelms us. Instead, we focus on the progress he is making. The progress of survival thanks to medical equipment early on to the current spurts of independence that warm our hearts and encourage us in the recovery process.

The stroke recovery journey so far:

ICCU for 5 days; Neuro Floor at Hospital (2 different rooms) 15 days; Swing Bed Hospital 34 days; Skilled Nursing Facility (SNF) July 12- Dec 20th; December 20th and ongoing – at HOME SWEET HOME.

He was assessed for a custom manual wheelchair on August 26, 2024 – it arrived at the SNF on November 28th. Yeah…that took 3 months to get! We lovingly joke about how neither one of us thought he’d ever be driving a shiny black Bentley (LT). The whole chair weighs 89.5 #s. LT = Light, so I could carry it. That isn’t possible, but I can lift it with the help of one other person.

We carry the wheelchair by transporting it on our wheelchair ramp attached to our car to get him around to appointments. It takes 2-3 of us to help him do so. It’s getting easier day by day. We’re able to get him in/out of the house and in/out of the car and load the wheelchair on/off the ramp (on sunny days…rainy days aren’t as easy or fun) within 10 minutes. When we first started the car adventures, it could take us up to 1/2 hour or more. We had a fun family shopping trip, and Mr. was able to tell us where to go all over the store!

He’s had inpatient/outpatient therapies. Speech to help him get off of tube feeding to feeding himself. They also helped him get back to reading. They identified the left visual cut and left neglect, so success in that area is slow, but steady progress. The referral made to a neuro-opthalmologist will finally take place at the end of this month. Over a year post-stroke. In the meantime, we practice with activities like reading cards that a classmate from high school sends him in the mail.

Physical Therapy has been a roller coaster. Medication changes, trying to get his BP controlled early on, were an extreme challenge. Thankfully, his fighting spirit hasn’t allowed him to give up. After PT Home Health visits ended, Mr. and I were able to figure out safe transfers. He’s able to get in/out of bed, in/out of the wheelchair, and in/out of the bathroom with my help, mostly with minimal assistance.

His ability to stand with the Turner Pro with my minimal assistance via a gait belt has been a game changer for our ability to do all the activities at home.

At Outpatient PT – He took his first walking steps with the help of his awesome PT this month.

We all continue to be impressed with progress. Determination to walk again is his superpower. He stood by our daughters on Father’s Day. Last year on Father’s Day, they all stood together too.

Outpatient Occupational Therapy – The referral to Outpatient OT after home health OT ended was delayed for months due to some scheduling snafu. We’ll finally start that in July, at the same swing bed hospital he was in a year before. It’ll be fun to show the staff there how far he has come. He does have some controlled arm movement, we hope to build upon that. There’s hope there for him/us. And the moments when he holds my hand or moves his arm to hug me warm my heart more than words can say.

His home office is right next to my makeshift office, and we share coffee here every morning.

Equipment we’ve gone through and still use:

His Bentley is where he spends half of his 24 hours/day. The list also includes: a custom built ramp to get in/out of house; a rental hospital bed & trapeze bar; bedside table, Purewick system for night time so we both can get sleep; mirrors for therapy; a lift chair to rest in instead of the bed; 2 lightweight manual wheelchairs; Turner Pro (2 of them); power stair lifts; sliding commode/shower chair; gait belt; and a used power chair to get around the yard. It’s tough with his vision issues to drive, but we’re working on that; hand weights & exercise bands; a Cubii to practice leg exercises in between physical therapy visits; and a reacher. Oh, and Siri. Mr. is helping write the algorithms by all the questions he asks her throughout the day.

Funny…he’s never asked her how long it takes for stroke recovery. I’m sure she doesn’t know either!

But, he is a stroke survivor and we’re here cheering him on! Year one ✅

PS – Thank you blogging buddies who have reached out, who have emailed me, who have commented here. I adore all your words of encouragement. I hope my blogging life returns to semi-normal soon!