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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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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." 



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MFH said…
There's Allie!!!

And Justin is smiling!! And so is Julia!!

OMG!!!
February 21, 2024 at 7:46 PM
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