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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
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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. 

 


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MFH said…
A malty, chewable backbone. Now *there's* a description to inspire curiosity.

Thanks for the update. Justin is my model of endurance. Glad he's doing better.
March 20, 2024 at 11:52 PM
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