We didn’t have a good start to this week, so it was good to have a day that was less eventful and more positive. Brendan had evened out and been stable all night and was in a decent mood this morning, he even tried to give me some smiles.

His head was looking puffy and swollen again today, so he got to spend some time in his bouncy chair. Sitting up definitely helps.

Even with a pair of socks on his hands, he is good at grabbing and pulling tubes!

“It wasn’t me”

Today there was a telethon at the hospital, ABC news was broadcasting live from the cafeteria. The news crew came around and wanted to shoot footage of the evening anchors giving quilts to the kids. We declined being on TV, but Brendan still became a bit of a mini celebrity.
He is the very first patient in this hospital to use a technology called NAVA. It has been used in hospitals all over the country for just a few years but it is new to this place and staff just finished training last week. The doctor on rounds tonight is one of the state’s leading experts and thought that Brendan was a perfect candidate.

NAVA stands for Neurally Adjusted Ventilatory Assist. It uses a probe that is put through the nose in to the stomach the same as a feeding tube. The probe on the end reads signals from the brain via the phrenic nerve that initiate breathing and triggers the ventilator.

More details here: NAVA info

NAVA is ideal for helping patients like Brendan that fight the ventilator and so far he has done well with it.

They had to bring in the new vent and switch him out before they could set up the new mode. The old machine is on the left and the new one is on the right. It is going to be tough to get used to the shocking difference.

The truth is it is the exact same ventilator machine, but in order to run NAVA, it needs a software upgrade. The vent he was on didn’t have it. This vent technology is supposed to make it easier to wean him down to a home based vent.

All snuggled up for a nap with the new tube in his nose.

Trevor had an exciting day. He poooooped!! We have been waiting for him to get that taken care of. Once he finally had a good movement, he had a terrific day and got to go play outside. He is still trying to figure out how to wear sunglasses.

He loves to be out and about watching the dogs run around!