Visitor Season

Visitor Season has commenced.  My mother spent a week here in Oro Valley during mid-January.  For 86-years-old, she is doing amazing.  We took her to the Sonoran Desert Museum, Tohono Chul, Whitewater Draw, and Bisbee.  We also fed her more Sonoran Mexican food than she has probably had in her lifetime.  Except for one day of rain on the way back to the airport, we had great weather for her visit.  And no, my Mom is not slamming margaritas, but Julia thought it was quite funny to place a large margarita in front of my non-drinking mother.  Well, it was kinda funny.

We have a couple of weeks without visitors, and then Julia's brother and sister arrive separately in the next wave.  We've been busy during the lull, but I'll save that for another blog post.

Merry Christmas 2025

 That sounds better than *cough, cough* A Sickly Christmas.  

Julia thinks I've gotten her sick too so I'm not getting any pity from her.  I'm muddling along but still managing to have some good family fun.  

Meet the Parents

 This will be a three-part post.

Our daughter Allie brought her boyfriend Corey here for a long weekend visit.  Julia had met Corey before during a San Francisco visit, but it was my first chance to "assess" the young man.

Turns out he is very polite, nice, and even enjoys Guinness.  After arriving late on Thursday night, they had to both work remotely on Friday.  We celebrated the end of their work week by going out to dinner at Amelia's, a well-known local Mexican restaurant.  

Julia splurged at Amelia's by ordering the molcajete mixto, a shareable dish served in a heated volcanic rock mortar, filled with grilled meats, seafood, vegetables (nopalitos), and a bubbling, flavorful sauce.

There were a lot of leftovers.

A good deal of time over the next two days were spent on the trails working off this dinner.  More to come.

Inhale, Cough, Cough

 

Smoky Haze

We have been experiencing poor air quality over the past few days, due to Canadian wildfire smoke moving slowly across Wisconsin.  Julia was all excited to see that the Northern Lights were going to appear recently in the Upper Midwest.  Not in southern Wisconsin, I'm afraid.  Those aren't clouds.  Just smoke.

Last week, Julia and I helped move my Mom to her new apartment in a Continuing Care Residential facility.  The multi-building campus has independent living, assisted living, memory care, and a nursing home.  She qualified for independent living and was "allowed" to pay an entrance fee that guarantees a lifetime rate that includes all higher-level services, except for inflationary adjustments.   

My mom is downsizing, moving from a two bedroom condo to a one bedroom apartment, but it is a much nicer space with freshly painted walls, newer appliances, a walk-in shower and great natural light.  Breakfast and dinner are included, although she does have a full kitchen if she doesn't feel like going to the restaurant-styled dining room.  She is already enjoying her new community.  

We are back at the campground.  Julia just came from the showerhouse, reporting that the showers are now working, but the stalls are out of toilet paper.  We are living at the Ritz, for sure.  At least it's quiet mid-week. 

 

Life by the River or If Momma Ain't Happy

Originally, we thought we might stay at this campground for at least a couple of months, as we tied up some loose family ends in Wisconsin and Iowa. However, there have been a few potholes on that road.

When we signed on for the month, the owner of the campground warned me that "he's only one guy", and things can take awhile to get some attention.  That only raised a little red flag. On the other hand, we might have thought twice if he had said: "The toilets may go ten days without getting cleaned, and the showers don't really work."

Now, you may be thinking, "what about the bathroom and shower in the Scamp?"   It's true that there is a small wet bath, but Julia doesn't like to use it, especially if there's a full showerhouse and toilets less than 100' away.

The showers here are coin-operated.  Two minutes for a quarter.  In theory.  Thinking that she needed a good six minute shower, Julia plugged 3 quarters in, and nothing happened.  I advised going to the other shower, and trying just one quarter.  The guys' shower starts up right away (with cold water).  After a minute, the water turns lukewarm, and I add more quarters, if needed.  The women's shower started right up, but sprayed sideways, soaking all of Julia's clothes and backpack.  After moving her stuff, she managed to get a decent shower in with additional quarters.

On the next day, Julia went back to the shower that "kinda worked" and stepped in when the shower warmed up.  She added two more quarters for a six minute shower.  As soon as she got wet and lathered up, the shower abruptly stopped without warning.  Julia was not a happy camper and has been taking showers at the school swimming pool since that time.  

Yes, she did tell the owner.  And he said, "I'm only one guy, you know.  But I'll look at it."  

He hasn't, so we took a road trip to another campground between Wisconsin Dells and Portage and signed up to switch over there in mid-June.   It's much nicer with lots of amenities and many guys making sure everything is clean and working. More expensive, but if Momma ain't happy, no one else is happy.  

The downside to all of this is we love this area.  We can walk to one of Wisconsin's best breweries. 

Scaredy Cat Oatmeal Stout

We see eagles and pelicans on the river walk nearly every morning.  It's a close enough drive that I've been able to play lots of advanced pickleball.  

And Callie gets a four mile walk in the morning and a couple of miles in the evening.

Kennel?

In other news, I made another trip to Iowa last week to further prepare my mom for a move to senior housing.  Julia and I will both go this week for the actual move, which will also involve Two Men and a Truck. Once she is settled, we can turn our attention to relaxing for awhile in Wisconsin.  There's a family reunion in mid June (Julia's side of the family), and then we're flying to Tucson for a week to look for a house.  Callie will stay behind at the kennel.

 

 

 

A Little Too Busy

 We've done a lot of sorting, preparing to either move or move stuff into storage until we figure out where to move.  One of the things I discovered was an autographed baseball and card of Hall of Famer Robin Yount.  I don't recall who gave it to me, and it's been in a box for many years.  Someone on Ebay wanted it, and it's now one of the items that's gone.

 

 There's good news and bad news.  

Our house is on the market.  We have open houses this weekend and a handful of private showings already  on the schedule.  On the bad side, we have incredibly warm weather for the end of March, and the Asian beetle eggs are hatching, making our home a hatchery.  We are doing what we can to minimize the proliferation of beetles, but it isn't fun.  At least no mice have died in the walls recently (knock on wood).

My mother's health issues have not improved.  I got a call from her Sunday morning, and she was headed to the hospital by ambulance.  There were then two trips back and forth to Cedar Rapids.  She hated the hospital and wanted to go home but doesn't feel secure at home by herself.  

So, in between preparing the house for sale/showing and assisting Mom towards the best path forward, it's been crazy.  I'm feeling a little PTSD, similar to going through Justin's and my dad's end of life.  The doctors haven't been able to figure out what's wrong with my mom, except that she's not eating enough  or keeping hydrated.  There's loss of appetite, feeling full after just a couple of bites, and no energy.  

Julia is headed for San Francisco for a previously-arranged trip to see Allie on Tuesday.  I'll be spending some more time in Iowa, figuring things out.  My uncle Lawrence used to tell me repeatedly, "It's hell getting old,"  when I was a teenager.  I didn't understand then.  I understand better now.

 

Winds of March

The winds of March bring change.  I saw my first robins this week while walking along Spring Creek.

My mother turns 86 today.  Happy Birthday, Mom!  We were supposed to go to Iowa for a visit, but she asked us not to come.  She is nursing a bad cold that has lingered for a week.

Julia called the realtor this morning to start the process for listing our house for sale.  We are in the last stages of getting things ready, and there isn't much more that can be done.  I loved this place for many years, but the time and expense for upkeep on an older home with its acres of land isn't that attractive anymore.  Wisconsin winters have also worn us down. With global climate change, less snow and more ice isn't a good trade-off.

We are nervous and excited about the changes ahead. Tucson is drawing further ahead as our next place to land, but we haven't made any final decisions yet and will probably take some time after this place is sold.  Renting for a year in Arizona, Colorado or even Mexico remains a possibility.

Ten Degrees and Getting Colder

 

Cold Sunrise

 

That's just the name of the song written by Gordon Lightfoot.  It was actually -13 F when I got up this morning (wind chill -24).  Tucson may have pulled back into the lead!  There's a lot of weighing pros and cons of Colorado vs Arizona by the wood stove.  Not much else to report.

I did enjoy a few games of pool and a beer with my brother this week.  We don't get together very often, so it's good to try to keep the lines of communication open, especially with my mother celebrating her 86th birthday next month.  He lives in Milwaukee and just started semi-retirement.  Our opposing politics and lifestyles keep things very casual and surface-level.  Not that there's anything wrong with that.   It's important to find common ground.  He and his wife have started going to concerts and recently saw the Steve Miller Band.  Music is one of our common interests.

 

 

 

Not really SAD, but

A lot of people are affected with Seasonal Affective Disorder in Wisconsin.  We have many, many days without sun during the winter months.  This year, we've had a string of days with heavy fog and unseasonably warm temperatures in the 30's and 40's.   Personally, I can't claim that I've ever really felt the effects of SAD, but this year, knowing that we are likely moving west later next year, I've been very impatient and annoyed with Wisconsin weather.  

Sun trying to fight through the clouds

It hasn't helped that my daily routine involves looking at the weather in Fort Collins and Tucson.  Their weather has been spectacularly sunny and more pleasant this time of year.  

So, I haven't been blogging much because not much is going on. I've substituted indoor pickleball for hiking. The trails have been muddy and not much fun. For Christmas, we had my mother, Julia's brother and Allie here.  I went and retrieved my mother from Cedar Rapids and brought her here.  My brother was nice enough to take her back.  

Brother, mother, and me

Julia would like to take a trip somewhere warm in February or March, but it's too early to say whether that will work out.  We are busy getting the house ready for sale in the spring.  In fact, we had our first showing to a friend of a friend who  heard we will be listing it in the spring.  Things will work out one way or another.  

One thing we have decided upon is not to buy anything out west until the money is in the bank from our house sale.  At that point, we plan to put our remaining household belongings in storage and head west with the Scamp to Fort Collins.  I took the opportunity to give some family stuff to my mother and brother in anticipation of our downsizing.

Callie soaking up the heat

From a personal standpoint, Julia and I will be glad to put 2024 behind us.  It was a very tough year with the loss of Justin, our son.  It definitely took its toll.  My body and mind are slowly recovering, and I am sleeping much better after some very poor sleep for many months. 

Fall Comes Early to Wisconsin

During the last couple of days, I've been able to see my breath when I take Callie out for her early morning ritual at 6 a.m. Our apple trees had a good year,and we collected seven gallons of unpasteurized cider. 

This will be the last year of cider-making.  Julia called her step-brother to come get the cider press, as we plan to be downsized elsewhere this time next year.

We recently entertained daughter Allie for a week. One day we went to the Boneyard, which is a combination dog park and tavern. This dog took a liking to Julia--whether she liked it or not.

I think one of Allie’s favorite parts of her visit was a road trip to Amish country. 

We also managed a short hike.

Tomorrow, we head west.  We will begin by stopping off at my Mom's in Iowa. 

August Update

It's a rainy, cool day in southern Wisconsin, but we won't complain as most of the rest of the nation goes through a summer heat wave.  

This month was marked by our 36th Anniversary.  Julia and I celebrated by going out to dinner at a small Italian restaurant bar a few blocks away from the State Capital. 

This has been a summer of projects in order to get the house ready to sell next spring.  We've been staining, patching, and painting. A couple of bigger projects involve hiring contractors to replace some storm windows and doors that have reached their expiration dates. 

In the fall, we will pack up the car and visit four different places to relocate/downsize in the West.  We've visited these places as tourists in the past, but we will be doing a deeper dive this time, trying to visualize what it would be like to live there.  If none of those places feel like home, we have back-up plans, one of which includes downsizing here in Wisconsin.  But we are in agreement that, if we're going to do a big move, this is the time in our lives to do so.  

Otherwise, we have settled into the Wisconsin summer.  We are both playing lots of pickleball.  I have a big tournament tomorrow.  The Madison area has lots of free music in the summer, and we've been getting out for that while the weather is good. 

Sidi Wacho at Sessions

Allie has been working very hard, as things are tense in the advertising industry with many layoffs.  She did find time for a trip to Mallorca, Spain for vacation and then remote work in Aspen for a week.  She paid for travel, but her accommodations were free with an invite from friends whose families had luxurious lodgings in those nice places.  There are pros and cons to the fast-paced corporate world in San Francisco.  

My mother has been moving forward with life after my Dad's passing.  She is selling a second condo they owned after first offering it to us.  My mother has a network of friends there, but I don't otherwise see the appeal of living in the middle of Iowa.  My mom has a valid passport, and we've offered to go with her to Scotland, a place that she is interested in.  Nothing planned yet, however.  

Callie says she is bored, and is ready for travel. 

 

What Callie wants, she usually gets.  We're Scamping next week along the Mississippi River.  

Busy Celebrating

I am between Celebrations of Life:  Justin's and my Dad's.

More than 125 people came over the course of two hours to a local park shelter for Justin's celebration.  I'm not terribly comfortable being one of the focal people at large gatherings, so the whole thing was a blur to me.  Julia and her pickleball friends organized it. We ran out of beds and couches at our house.  Julia and I slept in the Scamp.

A soul food catering place from Madison brought in Justin's favorite foods: fried chicken, ribs, macaroni and cheese, and cornbread muffins.  A large assortment of Justin's Asian snacks was also put out for people to try.  The dried seafood was tried by many but liked by few.

Many tears were shed, but it was also a time for shared memories and laughs.  I'm finally sleeping better after almost six months of broken sleep patterns.

We gave away most of Justin's furnishings and valuable personal possessions.  One of those included the wheelchair van, which we planned to donate to someone in a need of a vehicle at Justin's church.  

Unfortunately, two days after the man (my age) received the vehicle and before he could get the title changed, he died after suffering a stroke.  It's just been that kind of year.  His surviving brothers and sister want the van to go to the church, and that's the tentative plan for now.  

My Dad's Celebration of Life will take place this Saturday in Iowa.  I expect a much smaller gathering as my Dad outlived most of his friends and family.  After that, I think Julia and I will head up north in the Scamp.  

And The Other Shoe Drops

 

Muscatine, Iowa is an old river town along the Mississippi, settled by white folks in 1837.  Iowa State University operated an experimental farm here, and the area is widely known for producing some of the most delicious watermelons and cantaloupes in the country.

Last Sunday afternoon, towards the end of my stay at Shady Creek COE (just north of Muscatine), I received a text from my mother, indicating that my father's three month journey in hospice was close to the end.  I hitched up on Monday morning and towed the Scamp ninety minutes to a county park campground on the eastern edge of Cedar Rapids, Iowa.  

Indeed, my dad was no longer responsive, and the hospice nurse told us that he could pass away at any time.  We sat with him for the rest of the morning before taking a break for lunch.  I then returned to the Scamp to let Callie out for a short walk.  During that time period, Mom went back to my Dad's room and found that he had stopped breathing.  She gave him a hug and a kiss; he took one more big breath, and then he passed away.  

Dad was 91 and lived a full life.  He graduated from a small Catholic high school in Cedar Rapids and then volunteered for the Marine Corps during the Korean War, receiving a purple heart during two tours of heavy combat.  Dad's time in the Marines had a profound impact.  A disinterested, undisciplined student in high school, he found discipline and confidence as a Marine.

After discharge, he started college, completing his bachelor's and master's degree at the University of Iowa.  He then obtained his PhD from Stanford University.  

From there, Dad became the first principal at a new Madison, Wisconsin high school and stayed there several years before accepting a position as assistant professor at the University of Wisconsin-Milwaukee.  He wrote two textbooks in the area of secondary school administration, eventually becoming a full professor and chairman of his department for many years.  

My mother and father were very close during their long marriage.  At times, he was a difficult parent (Marine Corps strict) but he taught us to work hard and to never quit. 

Dad also taught us a love for travel.  We took family vacations across the country and even to Mexico and Hawaii.  He was very frugal in many other ways, but travel and education were things that he was willing to spend on. 

Losing my father and my son over a one month period has been one of the most difficult periods of my life--even though both events were somewhat predictable.  There will be two celebrations of life this month, and then it will be time to move forward with the memories intact.  Thankfully, the anxiety and stress have already started to dissipate. 

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.