Brendan enjoyed some tummy time today. It is hard to get him on his tummy, but it is really good for his lungs to turn him over. He did settle down for an hour long nap this way.

He also had a bit of silly time today, but his happy drugs have been turned up.

“You just like my mustache”

Trevor has been such a good sleeper overnight. He wakes up in the morning in a very good mood. He does not cry at all, he lies in bed talking a while. When he is finally ready to get up and have his bottle, he pushes his “call light” and then we hear the music on the baby monitor.

Trevor was a big handful of crab today for Gramma, but he still enjoyed 50 laps up and down the patio.

He is teething so chewing on the rubber top of his vitamins is great fun

I got to the hospital early this morning and the night nurse was getting ready to leave. She looked totally spent and exhausted, Brendan kept her on her toes all night! He is doing well on the NAVA, it seems more comfortable for him. He kept his sats up well, even when he was mad. He just demanded a ton of attention!

So they are keeping him pretty well sedated today. He needs to get some rest to recover and feel better.

Trevorrrrr innnn spaaaaaace

Trevor really likes to chew on Captain Calamari

Trevor’s best friend that he is always delighted to see is Brendan’s old oxygen flowmeter. He says hello to it every morning where it sits on the back of the couch. He is just fascinated looking at it.

Trevor loves to spend tummy time on the floor with Gramma

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!