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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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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. 

 



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MFH said…
Ok, I'll bite. What is the blue signifier on Julia's glass?

UnbeLIEVable bravery by Justin!

February 16, 2024 at 12:55 AM
John said…
Delta Beer Lab is all about the science of brewing beer. My glass was in a beaker. I think that the blue shape is a yeast culture tube, but it certainly looks like a number of other things in common experience.

Justin is brave and stubborn, which often serves him well. At 23, he didn't want to be hooked up to a ventilator, but he was even more stubborn that he wants to live.
February 16, 2024 at 7:14 AM
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