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.
