We hoped to start this new week with a good day. When I got to the hospital, Brendan had already been switched to the home ventilator. It was an upgrade from the one that he was on last time, an LTV1200. They were still using the NAVA probe in his nose to be able to track and monitor his breathing to see how well the vent was working. He seemed fairly stable but definitely less comfortable.
He got a visit from the people at the home nursing company today and was all smiles for them. They are working on interviewing people to provide home support at night when Brendan comes home, they have time to work on it but finding the right fit is going to be tricky.
The NAVA probe had to be moved up just slightly and instead of retaping his poor cheek, they put a piece of tape on his nose.
The fancier version of the vent
Brendan will keep an eye on the numbers for us.
He can look cute even with ridiculous tape on his nose
Unfortunately, the doctor called me later tonight and said that Brendan was battling the home vent too much and was working too hard to breathe. They switched him back to the NAVA and he settled right down and got comfortable again. He just wasn’t ready for the un-intelligent forceful nature of the home vent. It will take more time to wean him down to a support level where they can try to switch him again.
We call this Trevor’s “Something newww…” face. In this instance, it is more like a “you caught me” face.
But then he relaxes. He shows off his big knuckle pushups.
“I will not nap in outer space”
“I will not nap in any place”
(with or without clothes)
The pic of rendan watching the numbers. I guess he will find his comfort zone for breathing in good time.
On Trevor he looks like a happy non napper. Cute as a button doing pushups my kind of guy.
I don’t fault Brendan with liking Nava better! It adjusts for him instead of forcing him to work on a consistent pattern. I know it is frustrating too, because a successful switch to the home vent is a major step to coming home. My main question – why is Trevor sitting in his swing apparently undressed? Just too lazy to get dressed after his luxurious bath? =)