We are 22 hours into our return stay at Children's hospital. It's only just starting to feel real to me.
It's been 21 hours and 50 minutes of feeling that old 'What?! What the FUCK is going on'.
Where is my Simon, who loves to joke and insert his own name into anything and everything it fits or doesn't fit into. Old McDonald has a Simon? Totally.
Instead for the last 48 hours Jaime and I have been trying to manage this very sick and sadly very familiar child/world where we know how unplug lines and get Simon untangled before alarms go off, which Dr's to ask for and when, which nurses can be our best friends and which we should trust in no matter how we feel about them. We know what to order from the cafeteria and what toys to bring from home that won't take up that much space but might just bring out a smile or "otay" from Simon. We know how to keep in touch with our community and rely heavily on the texts, calls, and messages from our wide ranging family. We know how to rattle off Simon's list of medications and blenderized formula bolus feeding schedule. We know how to do this......
It's now Tuesday night. I'm tired. Simon is mumbling falling asleep phrases next to me clearly feeling better than three hours ago.
Jaime and I left him with Dianne and Dre to go home for a few hours and eat and clean and make him more blenderized food. When we left him he was feeling so crappy and certainly not any better than when we were first admitted.........blah blah blah viral not bacterial, blah blah several more days to kick it, blah blah, heart not having to work too hard right now, blah blah blah.
You know what, I'm sorry I can't regale you with details right now. All I can say is how fucking scared and out of my body I have been for the last three days. It's like having PTSD but the T is so very fucking real again.
I watched Simon struggle with breathing. I watched him soak his pillow with sweat. I watched as he pulled hard from both his neck and stomach trying to take in air. And I watched it get worse and worse over the course of hours. I watched as he regressed and couldn't get out simple 'yes's and 'no's. I watched the hours go by and couldn't get a medical person to tell me what was going on. I felt my head fill with facts but no feelings and I watched as Jaime and I moved around each other taking amazing care of business but not knowing how to really take care of each other.
I feel numb and exhausted and I just want to go home. I want to take Simon home. I want Simon to be better.
I don't ever again want to have to watch him struggle to breath. I don't want this.
But it's not, and tomorrow will be another day. Hopefully better.
Praying for sleep for us both