Update tracheotomy decision
We have decided to delay the trach procedure until next week. The exact date TBD but we just want to give Jo a chance to keep showing us what he can do. We had a long discussion with his Dr. She felt based on how he is doing right now it would still be her recommendation to proceed, however she understands our reasons for holding out a little longer. God and Jo need time to do their work! We did confirm there is no immediate risk to Jo's stability by not performing the procedure, if anything was to become a concern, we are in the best place to solve the problem. The insertion of the G tube (feeding tube) will occur tomorrow as scheduled.
"It's not fun without Jo" that's what Mady keeps saying. It is so difficult to hear, it is also profoundly true. I always knew Jo was like me in some ways, but I never realized how true it was until I met his friends. It is so easy to see now that Jo loves life. He loves laughing, smiling, and making other people laugh. I can't think of a better way to describe how I like to live my life. My family has been handed some difficult things to deal with. Jimmy's autism, Bella's illness after birth, and now this. I've always felt that when people get to know me they'd find there is little I value more than a good laugh, a warm embrace, and, especially lately, a great big hug. In that way I'd hope on some level they think, if Jim can be happy, why can't I? The out-pouring of love and support since this tragedy has kept me afloat.
Every one of Jo's friends seems so down. It's like a great part of their day is missing. To me, a part of my life is missing. Even more difficult is the unknown ahead. There isn't a single person in this building that can tell me what to expect. I will put my hope in God and Jo.
I am getting better at looking at pictures. I still can't watch his videos, it literally is an indescribable pain. He is so beautiful, so full of life, so excited by the simplest things, so gifted, and just so happy. I so badly need to see his smile and hear his laugh again, but a video just won't cut it.
I am sitting bedside while my amazing wife keeps some sense of normalcy at hour house. The adrenaline that has fueled us to this point is now all but gone, and times alone with your thoughts are haunting. We've brought in Jo's music, John Bellion is playing softly in the background as he rests. His hit "All time low" just ended, what a prefect tribute to how I'm feeling.
Jojobinks mommy and daddy are here, waiting for the fog to lift. I miss you so much. I miss our talks about everything.
5/15/2017 08:40:57 pm
Mike and I are praying often for Jo and your whole family. God is great!
5/16/2017 06:43:40 am
Just praying for the miracle I know is coming!! Constant prayers💝💝💝
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