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.