I had to learn how to take care of a ventilator with humidification on patient assist mode.
Danny was getting 28 breaths a minute from this machine when he was discharged...
it was imparative that I understood all aspects of his care including how to troubleshoot all the machines.
We would be taking home basically everything that was in the ICU at Riley.
I don't remember how long the training took.
I do remember that the nurses that were supposed to work in my home everyday helping to take care of things did not show up for class!
I had NO IDEA what this might mean in my future days...but I would learn!
Steve Welker and Kevin Stuart trained me.
They took me to the home of another parent, who had a child with Muscular Dystophy, with a ventilator just like mine so that I could see how she had it set up.
I didn't know it at the time, but this meeting proved to be very significant later.
But at this time all I was focused on was those machines and how to get them placed so that all would work well.
When my nurses didn't show up for training it had to be rescheduled and I was about to have a nervous breakdown. But Kevin helped me by taking me down to Riley's RT dept. and doing a private training session with me alone...
it helped alot and when we did the REAL training sessions I had a grasp on what was involved in keeping these things running and changing tubes every 3 days and ordering supplies for them.
It was scary, but it was just what I needed.
My kids had never met. Both of them thought they were my only child.
Finally I was about to pull my family together under one roof for the first time.
