Well, we are not quite surprised but Simon Lev showed his spunkiness once again and not quite in the best way possible. Last night at around 4am Simon decided that he was done having a tube stuck down his throat and coughed out his intubation tube. His team decided to see if he could breathe on his own and very quickly assessed that was not the case and re-intubated him.
He will stay on his ventilator for a while longer and is once again heavily sedated.
I love that he's got such a strong will but I'll also love it when he stops fighting the things that may be uncomfortable for him right now but are in fact keeping him alive.
Mostly I just keep repeating "what the F***!?"
Jaime and I are trying to settle into some sense of regularity in terms of what the next long-while is going to be like. It's unbelievable to realize that for the next several weeks, months, what ever, Childrens' Hospital is where we'll be spending most of our time. That Simon won't be going to his Friday swimming class. That he can't be nursing, in his sling, or sleeping soundly in between Jaime and I.
What's harder today is that we're even discouraged from touching or talking to him as that stimulates him in ways that aren't helpful. What's hopeful is that they're thinking of giving him some breastmilk tomorrow via his feeding tube.
His heart is still enlarged but beating mostly at a consistent and healthy rate. It is still inflamed but with the ventilator controlling his breathing and the different sedatives and pain medication that he's receiving, he is resting right now and that's the most important thing.
Tomorrow is another day and we're hoping that instead of today's "just maintaining" that we might even begin to see some improvement.
Thinking about the future in the long terms runs the gamut but more than anything I want to think about telling Simon this story at different stages in his life and have it be an incredible place to have come from as he goes through other and hopefully less difficult moments.
The phone messages and emails are a gift to us for when we take a break from the I.C.U.
Thank you for all of them and the lasagnas, brownies, cookies, fruit, and most importantly the love. We all thank you for the love.