My darling boy has been weaning from the vent for a few weeks now. He went from a PEEP of 8 (CPAP) to 5 and off of pressure support during the day and back on at night. Then about a week and a half ago, I was inspired by the beautiful weather and I started taking him off of the vent (and onto the trach collar) for a few hours at a time. He's doing fine with it. He has gone for several walks and sitting on the deck with Mommy and Daddy. He's currently spending about 6 hours off of the vent per day. I think he would be fine with being off compeletely, but I want to go slowly and use it preventatively to try to keep his lung open and healthy.
He gave me 5 heavenly nights of sleep in a row a few weeks ago but has been back to his up all night schedule. I was just learning in my A & P class that the hypothalmus regulates our sleep-wake cycles. Perhaps that is a factor as well as his blindness.
Everyday I try to celebrate the joy that is Ambrose! I feel so blessed to have him on loan to me from Heaven. I am so proud of him and in awe of him. But sometimes it is hard not to be painfully aware of all the things that he will never be able to do, that we will not be able to share with him. And of course I am constantly aware of his mortality. I want him to stay with us forever!