Can’t Get Enough

 I’m back on the Mississippi River. This time, I’m camped at a Corps of Engineers campground just north of Muscatine, Iowa. It’s one of my favorite places to hang out and do absolutely nothing. Well, some people would be bored, but I spend my time reading, walking and watching. 

Julia and her sister took their brother Scott to New Orleans as a 60th birthday present. I’ve been to the Big Easy several times. My grandfather used to say this about places that he didn’t plan to return: “I didn’t leave nothin’ there.” I wouldn’t go quite that far about New Orleans, but I’m content spending some time along the same river—upstream a bit at $13/ night with the Old Geezers’ discount.

Callie is a happy camper. 

Mid-week, this place is quiet. I can see the river out the Scamp’s dinette window, and I have a nice buffer of woods behind me. 

I’ll build a fire tonight at dusk. There’s a cold Pseudo  Sue IPA from Toppling Goliath in the fridge when I’m ready.

Beer in the Barn

Some of the best beer surprises are the ones you find in unexpected places. One of our new Iowa pickleball friends recommended that we try out a bar in St. Donatus for a good burger with homemade French fries. I asked about the beer, and the response was along the lines of “yes, they have beer.”

St. Donatus, population 120, is a very small town founded by a Luxembourg early settler. If you blink at highway speeds, you could easily miss it.

In doing some navigational research, I saw a listing for “Beer in the Barn” across the street from said bar and tucked behind an old Inn. As it turned out,  the burgers and fries at the bar were just okay, but Beer in the Barn was a stunning find. 

The pictures we took don’t do it justice. The stone barn is supposedly the oldest standing barn in Iowa. 

We asked the chief bartender/owner to tell us his story. In doing so, we learned that his wife is the brewmaster. We later learned from her that one of her best friends lives in Lodi. That Lodi woman is one of Julia’s friends and was Justin’s long-time piano teacher. Small world!

Julia’s hazy IPA was delicious. My milk stout was very good. There will be live music on Sunday afternoon. We plan to be back.

Along the River

Yesterday would have been Justin’s 24th birthday. I haven’t been sleeping well, and there are so many memories in the house. This morning, we headed to Iowa and set up camp a few steps from the shore of the Mississippi River. 

The campground is quiet mid-week, and it was a perfect day in the Upper Midwest: temperatures in the mid 70’s. A haze from the Canadian wildfires masked an otherwise sunny day. 

We’ve already seen our first barge. 

There is something very peaceful about sitting in a camp chair and watching the river flow by. 

May Update

After battling a failed respiratory system for four months in the hospital, my 23-year-old son, Justin, died last night.  Last week, he was driving the hospital bean-counters and back-office people crazy by having way too much fun in the hospital.  He was playing video games, watching sports and crime shows on tv, and ordering Uber Eats.  Then Saturday afternoon, he went code blue with rapid changes in oxygen level, heart rate and blood pressure.  

With modern medicine, drugs and technology, hospital staff stabilized his numbers, but Justin became quite uncomfortable and agitated.  His last words were, "Will it ever end?"   Allie flew home on Sunday night, and her presence in the hospital room on Monday brought a final, brief smile to Justin's lips.  He passed later that night.  

I'm proud of my son for his lifetime willingness to fight for a life that was in many ways fuller than most able-bodied people.  In return, he made our lives richer and fuller.  

After a time for grieving the loss of Justin and also celebrating his life, I will be back, hopefully, with more adventures of my own to document in this blog.  Life is short, and tomorrow is not guaranteed. 

April Update

 

It's been awhile since I've posted.  Justin's situation is hard to write about, but I know there are people who want to know what's going on with Justin, my son.  In truth, he is getting sicker and weaker.  For awhile,he made great progress, talking, eating, and getting back into his power wheelchair.  

Then he started getting weaker.  His left lung became covered with secretions, and he needed surgery to scrape things out. Then a CT scan revealed more new spine fractures (total of 7).  After that, he just hasn't been able to get over the hump.  This week, Justin decided to discontinue the weaning from the ventilator.  He is on full breath support and can no longer use the voice valve to talk without dangerous oxygen drops.  Pain medication has been significantly increased to help him deal with the pain.

It's a tough thing for a 23-year-old to confront one's mortality.  We will continue this journey with Justin to the end to the best of our abilities.  We don't know how much time is left, but we are glad to have time to say the things that need saying.  

The only travel that I will be doing in the foreseeable future is to visit my Mom and Dad in Iowa, where my father is in hospice.  He has his own journey.  Due to strokes, both his body and mind have betrayed him.  But he is over 90 years old and lived a full life.  He is a tough ex-Marine and will not go silently into the night.  

I will update again when something changes.  For now, it's daily visits to  Justin's hospital.  Julia and I alternate most days to give each other breaks.  Justin and I pass the time reliving our common experiences and watching shows on tv together.  He expects me to read his lips.  I expect him to use his voice app.  Yeah, we still clash a bit.  Sometimes he gets back at me by forcing me to watch women's soccer.  It's all good--at least as good as it can be under the circumstances. 

Starkweather Beer Company

 When I moved back to Madison to attend law school in 1987, we moved to a crappy little apartment near the banks of Starkweather Creek on the unfashionable east side.  Today, the east side is booming, and one of the newer brewpubs is called Starkweather Beer Company.

It was Saint Pat's Day.  While Guinness is a decent light-bodied stout, I opted for Starkweather's dry Irish Stout, named "Jamestown Jackdaw." Coming in at 5.9 ABV, it had a malty chewable backbone.  It's a new favorite stout for me.  Julia had Late Winter Haze, a New England IPA that didn't have as much fruitiness as she likes in a hazy.  It was still well-executed.

We walked down the street to the Harmony Bar, where Julia enjoyed a complete corn beef and cabbage dinner.  I opted for the Reuben sandwich.  Mine was washed down with an Edmund Fitzgerald porter from Great Lakes Brewing.  Julia enjoyed her Chaos Pattern IPA from 3 Sheeps Brewing.  Both are great beers.

Justin update:  After a long holding pattern, Justin has started to make some big strides in his recovery journey.  A new and smaller trache now allows him to speak (at length) and also eat small bites (much better tasting than puree).   These were two major goals that Justin set for himself when he decided that life on a trache is preferable to death without a trache.  

Yesterday, he made it into his wheelchair for the first time in ten weeks.

Justin's medical condition is still complex, and he continues to have "events" which would be a crisis outside of a hospital.  He is currently in a specialty hospital for vent patients and receives a high level of care.  The goal for their patients is to wean people off their vents and send them home.  Justin's muscular dystrophy may interfere with a complete weaning off the vent, but he is still making progress.  

Medical update on Dad:  My father had serious strokes very recently.  The doctors at the hospital opined that he doesn't have long to live and that additional strokes are likely, based on the MRI.  He has been transferred to a nursing home and is receiving hospice services.  Dad is 91.  Mom celebrated her 85th birthday earlier this week.  We have had a couple of trips to Iowa recently to visit my Dad and to support my Mom. 

 

Eight Weeks and Counting

Our days are starting to feel like the plot in the movie "Groundhog Day." We go to the hospital, and one of three things occur.  Justin is asleep (floating on pain medication and/or increased CO2 levels).  Justin is awake and in excruciating pain (not enough pain medication).  Justin is awake and in moderate pain, attempting a new breathing trial.  The latest experiment is the dosing of the fentanyl arm patches.  Too much, and he's asleep all day and can't work on his breathing.  

During breathing trials, the respiratory team lowers the ventilator support, and Justin tries to last as long as he can with the lowered support--up to 12 hours.  He generally does very well at mildly or moderately reduced support.  When they move him to trach mask breathing, when he is breathing primarily on his own with a little oxygen tank boost, he has quickly faltered.  

This cycle has pretty much repeated itself for the last seven weeks.  The difference now is that with the trach, they can easily bring back full respiratory support by changing the settings on the ventilator.  Before the surgery, it was a crisis situation requiring intubation (breathing tube thrust down his mouth and throat).

Justin will remain at the specialty hospital as long as it takes, provided that he continues to show progress.  There is a team that decides whether progress is continuing to occur.  Hard choices will need to be made at the point that no further progress is being made.  We hope that one of the choices is he gets to return to his apartment with his 24/7 care team.  We have a hard time believing that Justin would get any better care in a skilled nursing facility (nursing home), but there is a lot that we don't completely know yet about his care needs.   The hospital staff talks a lot about when he gets discharged but also acknowledges that discharge is a long time away.

On another subject, at Christmas my brother-in-law Lionel gave me a Wisconsin craft beer coupon book, providing two for one coupons at hundreds of Wisconsin breweries and brewpubs. We haven't made a very large dent in the book yet, but we did try two breweries out yesterday.

First we hiked the Glacial Drumlin Trail between Korth Park and Lake Mills. 

Most of the trail is along a former railroad grade, so it was flat.  But it was a beautiful early March day.

We hiked about 3.5 miles to  Sunshine Brewing in downtown Lake Mills.  Nice building, inside and out.

Julia's Belgian Dubbel is on the right and and was decent.  My pastry stout was overly bitter, while lacking sweetness and the alcohol warmth usually associated with pastry stouts.  Our food, two carne asada tacos, was pretty expensive and chewy.  Win some, lose some while supporting local businesses.

After walking the 3.5 miles back to the car, we drove the short distance over to Tyranena Brewing on the edge of Lake Mills. Wisconsin.

 

Tyranena is a bigger brewery (no kitchen/food), and its products are widely available in larger grocery and liquor stores in the Madison area.  I had the Millionaire's IPA.  Julia had a brown ale.  Both were above average and true to style.  And with our coupon book, six bucks for two beers.  No complaints here. 

 

 

 

A New Hole

Justin tolerated his tracheostomy and has been breathing with the assistance of a ventilator since Friday.  The next step is a transfer to a specialty hospital, where he will receive speech therapy and learn to eat with the trache.  The average stay there is about 25 days, but nothing has been average about Justin's hospital stay so far, so we will see.  

The newest development is the prescription of fentanyl patches to alleviate Justin's back pain.  These take about 12 hours to start to have an effect and then last about three days, supposedly.  When I visited Justin this morning, it had been 15 hours, and he wasn't feeling any pain relief yet.    Too much pain medication means that he is too groggy to do breathing therapy.  Too little, and he is in excruciating pain. 

That hospital transfer will supposedly occur tomorrow.  Another day of "one day at a time." 

Moving Forward

The third time was not the charm. Justin made it seven days off intubation and into intermediate care for one night before both his oxygen and blood pressure dropped to unsustainable levels.  The ICU doctor told us that it was a crisis situation, and there was no choice but to do a fourth intubation.  

Justin certainly gave it his best shot. After weighing the choices (a high chance of fatal respiratory failure or a tracheostomy and an intimate connection with a ventilator, Justin decided to go ahead with the tracheostomy.  Things will change, but Justin has adjusted to physical changes for his entire life.  

Julia and I are both relieved.  There will certainly be challenges ahead, and Justin isn't out of the woods yet, but this is a path forward.  There will be three to four weeks of recovery after tomorrow's surgery, and he is still dealing with the spinal fractures.  

One day this week at ICU, I got a call on my phone from an unknown number.  It turned out to be the local housing authority.  After four years, Justin has made it to the top of the waiting list for low income, wheelchair accessible housing.  These spots are very difficult to get, and we started the paperwork immediately for Justin.  Everything is on the ground level, walk-in shower, lots of natural light and there is a nice patio outside the living room.  The area seems both safe and quiet.  And it doesn't hurt that the rent is very reasonable and includes his utilities.  

With some good news, Julia and I were ready for a beer at Delta Beer Lab in Madison, Wisconsin.  I had the Scotch Ale on a nitro tap, and Julia had a Hazy IPA.  Mine was served in a beaker.  It was very good.  Since mine was small, I had two. 

 

The Battle Rages On

 Justin has now been extubated a total of three times, and the hope is the third one is the charm.  He remains in ICU, breathing with his bipap machine, supplemented by oxygen.  He hasn't passed his swallow test yet to start eating food; they will test his swallowing ability on Monday, if he can tolerate the 45 minute procedure without his respiration tanking.  

A swallow test isn't quite as simple as proving he can swallow something.  They have you swallow liquid then track its path to make sure that it doesn't end up in the wrong place (the lungs).

Justin also hasn't been able to get weaned off the morphine IV.    For awhile, he was either in excruciating pain or not conscious, but they seem to have found a happy medium where the pain is managed.  Most days, Justin texts me and is able to communicate during our daily visits.  A few times, he has texted me in the middle of the night, not knowing whether it's night or day in his room without windows.  

Justin has started taking other visitors.  His pastor came and visited with him this week and also Julia's sister. Allie is coming home to see him next week and will stay awhile, working remotely.   

The hospital also assigned a nursing assistant to sit with him 24/7 to avoid any more "unattended respiration events."  The ICU staff is planning on moving him to intermediate care as soon as a bed opens up (the hospital is full to capacity).  However, the nursing assistant order will travel with him throughout his hospital stay.

A Good Day in ICU

Rough Start to 2024

This year has started out with some difficulty.  Regular readers will know that my adult son Justin was born with Duchenne's muscular dystrophy.  We knew the time would eventually come, but we were still not prepared for the last stage of this terminal neuromuscular disease.  Justin, who is 23 years old, stopped breathing at his apartment due to respiratory failure secondary to pneumonia and Covid.  His caregiver immediately called 911, and Justin was resuscitated in the ambulance on the way to the hospital. Once at ER, Justin was intubated and began breathing attached to a ventilator.  After a few days, he was extubated.  After just a few hours, his breathing crashed again, and he was re-intubated.  

At that point, the doctors decided to let him try to gain his strength back for a total of two weeks on the vent for one more try to breathe on his own before going ahead with a tracheotomy which would attach to the vent on a permanent basis.  In fact, Justin did regain some strength and was successfully extubated for awhile.  He was able to eat a little food, talk with us, text non-stop during some playoff football, and seemed to be getting back to where he was pre-hospitalization.  They moved Justin from ICU to intermediate care and eventually to general care.  

During that period, Justin began experiencing severe back pain and needed heavy doses of pain medication.  And then things took a turn for the worse with his blood pressure crashing and then his respiration crashing.  Yesterday, he was back in ICU.  Early this morning, we were informed that he had several overnight respiratory events and was going to be intubated again.  

Justin has been in the hospital for going on four weeks, and it's been a tough ride.  Although all of his muscles have atrophied progressively over his entire lifetime, Justin has a strong disposition and continues to fight.  This disease is relentless, and no one emerges victorious.  We will go to the hospital again later this morning, but it seems inevitable that a tracheotomy and permanent attachment to a vent is going to be inevitable, if he survives this time.  The vent will provide stable respiration, but it's something that Justin wanted to avoid if at all possible.  Two of his remaining joys are eating and talking, and these activities will change.  We don't know yet how much.  

Our winter travel plans have obviously been canceled.  Family comes first.