Brendan’s fever was gone today and so far cultures have come back negative. He is staying on at least a three day course of antibiotics anyway for coverage until the rest of the cultures are done.
He was having a pretty good day today. He was smiling at times, quiet and seemed comfortable on the NAVA so he was just able to rest. The doctors will not be trying to push him to the home vent again this weekend. They are going to give him plenty of time to recover and rest before they test him again.

The physical therapist sat him up for play time and then he got snuggled in on his belly for a nap.

We are working on playing with different toys like bumpy rings. Brendan must be thinking about how he can use this ring to get a tube out.

He was good at throwing away the rings

Captain Calamari hangs from the vent arm

I did my first trach change today and it went very smoothly. Brendan handled it like a champion, he stayed nice and calm. I suppose all of the drugs have a lot to do with it, but he didn’t need any extra doses today at all.
While we were doing clean up, I changed out his whole ostomy base and cleaned him up. Then he got his mobile and had a nice long nap.

Bill and Gramma decided to reorganize the living room while I was at the hospital. We had been having a million discussions about how to most efficiently set up the room for when Brendan comes home. I think we have found a configuration that will work well and it was an awesome surprise to come home to all the furniture moved and the floors so clean! Trevor helped too. After all, he was wearing a 12mo size onesie today, he is BIG!

He likes the recliner in its new place!

He is just lounging on the couch with a fish.

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)