Brendan had a pretty average day today. He was kept comfortable with chemistry.
I spent a lot of time at the hospital talking to him and trying to keep the drug doses further apart by keeping him happy.

He got some morphine right as I got there so slept while I made a ton of phone calls.

A little later he had Ativan again. They recalculated all of his drug doses for his adjusted weight today, so it was a bit stronger than it has been. He was feeling pretty cozy.

He might seem awake and happy, but this tells the real story. The eyes are open, but Brendan isn’t really there.

Video evidence!!!!! At the very end, watch as I back away from him. He watches me leave. I hide from view and within seconds, he has a full grip on his feeding tube and I have to drop the camera to stop him from pulling it out. He spends 4 solid minutes petting his lion, and the moment he knows I am not watching him, he goes for the tubes.

I have had technical issues tonight, as well as some work to do, so timing didn’t work out for taking new Trevor pictures. He is rocking in his swing, sound asleep now. So I share this video from earlier that I don’t think I shared of Trevor having dreams about his bottle.

As I drove to the hospital this morning, I was thinking to myself that it seemed like a long time since I walked in and was pleasantly surprised by the news so that I had something good to say on the blog.
Then I walked in to the room, and there was Brendan with his bed all nice and clean, his wires all sorted and untangled, and the ventilator machine GONE. He was extubated last night and skipped over the CPAP and is on 6L/min flow on the high-flow nasal cannula.

He was sleeping soundly

Then I found out from the nurse that Brendan pretty much insisted on being extubated. They were fighting him so much over trying to pull out the tube that the doctor finally gave up and told them to just take it out so he could rest. He had a couple of his meltdowns overnight and needed Ativan and Morphine a few times. The night nurse calls his spells “fits of fury” and says she hasn’t seen such a mad baby in a long time. I think it is the way he locks on to your eyes and stares in to you with his anger, he doesn’t just cry.

He takes a long time to get comfortable after he gets his meds.

He did enjoy his mobile for a while before finally drifting to drug induced sleep

The other pleasant surprise this morning is that they presented some REAL information during rounds about Brendan’s diagnosis. The cardiologist brought me print outs of a few key slices from his CT scan that showed that his left pulmonary artery IS enlarged and located right where the narrowing is in his left bronchus. The enlargement is a normal effect from the PA banding. His airways are not strong enough to resist this external pressure, so what we are seeing may not be just pure floppiness.
The doctors presented several complicated options for treatment of his problem and moving forward with his heart repair. I could type over an hour trying to explain them all, but it all involves surgeries in different orders and lengths of time.
The team is going to carefully analyze the pros/cons of each approach and then get together at their conference on Monday and hopefully make the determination as to the right course of action.
A PLAN sure would make me happier.

I think I know how I am going to motivate Trevor to learn how to crawl! He got real happy seeing the sink filling with bubbles and did his push ups for a few minutes while I got the bath ready.

He spent some more time as astronaut Trevor, coordinating plans with his space minions.

He is still wide awake, hopefully he will have another good overnight sleep. He is doing so well in his crib so far!

Brendan did not get extubated today, the respiratory therapist believed that there was still too much inflammation and swelling from the procedure. If he ran in to trouble, it would make it very difficult to re-intubate.
He was pretty good today, but he had some significant tantrums too.

The bronchoscopy showed that Brendan does have a floppy airway in the left mainstem bronchus, it closes up like a slit when he breathes quickly. The right side is wide open. His left lung is in good condition, but his right lung was the one that was fully collapsed when he was born and still has issues. So when he cries, he loses access to his good lung and that is why his sats drop so quickly.

The doctors have some difficult decisions to make about what to do next, we are waiting for them to deliberate what will be the most effective course of action with the least amount of risk.

Brendan was pretending to sleep until you stopped watching him, then he could work on getting his hands free to pull on his breathing tube. If you looked at him doing it, he would quickly close his eyes.

Keeping his arms wrapped and next to his body without bundling him up so he stays cool

He really loves his rainforest thing with frog sounds.

Trevor had a special fun day today. We ordered him a new outer space play gym extravaganza supreme. He even had to dress up in his outer space jammies in order to try it out the first time.

Super tired baby was worn out from playing in space