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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 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


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MFH said…
Thanks for the update. Things seem too tenuous to ask.

February 10, 2024 at 11:04 PM
John said…
Just taking things day by day and thankful for the good days. I was able to watch the first half of the Super Bowl with him last night. For most of Justin's unique life, we have redefined success and failure. This is just another phase for battling a horrible disease that always wins in the end.
February 12, 2024 at 6:58 AM
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