After failing the transition to the home vent last night, Brendan had an OK night. He is back on NAVA until he gets stable again and they will continue to work on weaning him down in settings. Maybe in a few days they will try to do a switch again.
He is burning a fever today, so his antibiotics were continued and a bunch of blood and mucous cultures were sent to the lab for tests. The doctor does not think it is infection, it is probably a side effect of withdrawal, stress, air hunger and work of breathing. They have to do the cultures anyway to be safe. In the middle of the night, Brendan managed to pull his ventilator tubing loose from the trach so he has the stress of that event to add to his discomfort.

This morning I was going in a little later than usual. I called in to check on him and get an update on rounds from the nurse. He used the opportunity of the nurse being at the desk on the phone to pull out his feeding tube! Two people and an xray later, it was back in place. A little tylenol and a cool washcloth later and his fever was lower too.

“You see, it’s like this.. the tubes were flying out all by themselves, and I was just trying to make sure they stayed in place. I don’t need this sock on my hand!”

“If you believe that, I have a bridge to sell you!”

Pulling tubes is exhausting work

They are trying to use tape to cover the loops where he sneaks his fingers in. I’d pull that mess off of my face too.

Looking cute under his cool washcloth

Trevor’s biggest problem is that he is too photogenic! I have a hard time sorting through all of the pictures that Gramma takes during the day to pick the best ones for the blog. All of his varied expressions totally crack me up. He had two poops and two nice long naps today, so he is a different little boy.

“The camera again? Can’t you see I am trying to read?”

Too many interruptions, he is just going to get the info via osmosis.

We are going to have to watch the Gramma, she was test fitting Trevor in to her carry on!!

Peekaboo TSA!!

And to answer Aunt Heather’s question, Trevor is a true Arizona baby. When it gets warm late in the day, he sheds! He likes to get out of his clothes to watch Wheel of Fortune, then have a bottle and get in to his jammies for the night. It is cute now…

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)

It was a much better Monday than last week. Brendan is feeling more like he did last Friday. His numbers were not as good as yesterday, but his color and his mood were better (for him).
The doctors have switched him to a regular pressure control mode on the big hospital ventilator instead of NAVA. It is the intermediate step to getting back on to the at-home equipment. They normally would have transitioned to the home vent in the same day, but with Brendan it is all going to go slower now. Maybe he will be on the LTV1000 tomorrow.

He likes to keep an eye on his monitors

He was throwing out smiles to everyone today!

Until it was time to take a nap, then don’t you dare mess with his lion.

Brendan was awake most of the day and we had lots of play time. He really liked watching his mobile, as long as I kept the animals spinning. He is not in to boring, regular mobiles.

A video of Brendan being cute, trying to talk past his trach. You can hear his newborn neighbor in the background. Maybe she is the reason Brendan wouldn’t nap today!

Trevor thought that we made too much mess yesterday, so today he was going to feed himself!

This expression is funny, I wonder what he was reading

He didn’t want to take a nap today either, but the swing won