Meds. He desaturated and luckily I was there because like I said before don't get comfy. Everyone is nice but it is still just "their job" and that is MY LIFE in that bed. No one paid attention to the trend but me and guess who caught it before it got bad? (((Pointing at my motherfucking self))) I can't give him meds to fix one problem and start another. Eventually his body will go to sleep. Last I checked we all need to breathe.
He's confused. That is the best way to explain it. Imagine Ground Hog's day where every day you wake up in a netted cage with paddles on your hands and you are explained why being held captive is for your own good. What would that do to you mentally?
I can only imagine how he feels. How confusing it must be to have people come in and walk around like this is normal. They say he won't remember. None of them do. But I do. I told you after a while, you accept some crazy shit. Imagine if a mother said out in public matter-of-factly, "My son has been restrained for 3 months now in bed. I'm going to see him again tonight and do his laundry."
I struggle with that. The fact that is the theme of life for us right now and I can say that straight faced. To combat the crazy I try and make it normal. When I am there I let him out. Gloves are off. Netting up. I swore my son would never be in a cage and I can't stand that I have to allow this. It's for his own good. He grabs at the trach collar and he rips at his g-tube causing granulomas. I wrestle with him to stop every night and I win. That is my price for his freedom. Cardio and anxiety fueled starvation that has me as of today 101 lbs lighter than when this started. For those of you who have seen me and been envious, hug your healthy kids for me. Know my son's health Is the price I have paid to look like this. I would take every pound back to have my son back to normal.
His Enflamed brain tells him to punch and push and I stop him and dodge blows like a domestic violence victim who loves someone and holds steady to the knowledge that this person loves me and a disease makes them do what they do.
This is hard, have I told you how hard this is today?
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