April Update
18 April 2024 | 12:42 am


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
20 March 2024 | 11:20 pm

 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
3 March 2024 | 7:38 pm

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. 




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