Since Jaxon’s birthday things have been very busy. We’ve had several adjustments in meds and with the ventilator. Jaxon has started cortisol supplement when he is sick or his body is under stress. His ventilator pressure has been increasing. There are times even with the increases that Jaxon is having sever obstruction and his body is accepting 0ml volume of air with his ventilator pressure maxed out. I’m going to have to learn how put it a tube (down his throat past the obstruction)and bag him in an attempt to get him breathing again. This is very scary. We are also going to be meeting members of the local fire department so they can meet Jaxon and know his care plan, in the event they are first responders to an emergency with Jaxon and his breathing or cardiac issues.
We have gotten a new Armadillo back for Jaxon’s wheelchair(see pic above) to help give him better support in an attempt to alleviate some of his back/neck/leg pain.