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.

Driftless Area

Much of southwestern Wisconsin is known as the driftless area:  where the glaciers never covered the land in ice.  It's characterized by steep bluffs and deep river valleys. The Kickapoo River runs through here.  

Kickapoo is an Algonquin name for "one who goes there, then here."  Sixty miles as the bird flies from its source to its mouth, the Kickapoo zig zags 126 miles.  The Kickapoo watershed is nearly half a million acres. 

Recently, Julia and I set off for Wildcat Mountain State Park between the small towns of Hillsboro and Ontario.  We elected to ignore Google Map's fastest route in favor of county highways and town roads that took us through Amish country and beautiful scenery.  

On a weekday, we were the only vehicle in the state park's parking lot.  Trail conditions required some caution with snow and ice on the north-facing slopes and mud on the south-facing slopes. The views on top of Wildcat Mountain (a Wisconsin hill/bluff) and the brisk wind made us feel alive. 

Callie is catching drops from the melting icicles.

After finishing up our hike on the Old Settlers Trail, we drove to the Hillsboro Brewing Company for pizza and beer. 

The pizza was good, inexpensive and was big enough for leftovers on a second day.  As I was sipping my "Joe Beer", a no-nonsense porter with no added flavoring, I spied an interesting sign over by the cashier.

 

 

Of course, I had to ask.  Apparently, the new canning equipment wasn't filling all of the cans full of beer.  Some had as little as six ounces in a can, while others nearly 10 or 11 ounces.  The shorted cans couldn't be sold with the regular labels.  Hmmm, at $12/case, we were pretty excited to bring home a case of "no label" stout.