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.