Five days is LONG! Five days is LONGER in the hospital! But today he is busting out of this joint!
Like a friend texted yesterday- he's doing the best he can in the situation he's in. He has had four days of intense medicine and had surgery to insert his central line and now this kid is done. He's done with people coming in all night poking him. He's done sharing a room with other screaming kids. He's done with having to be hooked up to a pole. He's done!
We as parents know our road ahead is going to be bad- daily medicine and a shot- but at least we can be at home...together.
Now we wait. Hopefully in a month or so we will know if it worked. In the meantime...he will need blood and platelet transfusions often (we are trying to set that up at a local hospital). A nurse will come twice a week to the house and his immune system is going to be basically nothing. We are getting our ducks blown out and adding a special filter to our furnace. They aren't worried about the common cold, it's more if he breaths in something a healthy immune system can fight off, he won't be able to do so. So, we may be crazy, but we're going to do the most we can to keep him safe.
Today we celebrate getting to bust out of here: