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

It was a hard day of waiting, and the hardest part is that the waiting continues. Brendan had his catheterization and his bronchoscopy today and made it through both procedures with no serious issues. He came back to his room still on the breathing tube/ventilator because the bronchoscopy can cause irritation to make it difficult to extubate after the anesthesia. They plan to extubate in the morning if all is well. They are keeping Brendan sedated with Ativan and Fentanyl and using restraints on his little hands if needed to keep him from extubating himself. We have all seen how his little pinchers work and he will be all over pulling that tube out if given the opportunity.

We will not know anything about the results of the tests today until the doctors have had a chance to do lots of math, study the results, and get their heads together about what they saw. The little information we have so far shows that there is still contradiction of opinion between some of the doctors. We will be having a “family care conference” soon where all of the specialists from all of the fields will get together in a sit down with us and really discuss his treatment and make sure they are all on the same page with the same goals and priorities. Hopefully that will be in a day or two and we can move forward.

What we did hear today from his cardiologist was some good news. I think he was just trying to cheer me up some but the facts are still the facts. He says that even though Brendan’s anatomy is different that yours and mine, he still has a strong heart. They like how it is working and they did not find anything surprising during the cath. He insisted that once Brendan can make it through his heart repair surgeries that he should do very well. Getting him there is going to be the hard part but there is a bright light at the end of the tunnel for him. There is another baby named Brendan on the floor a few rooms down from us. He has had several surgeries already and is 18 months old. They have exhausted all of their options with him and he is now on the donor list to receive a heart transplant. In all of the things that my Brendan has gone through, I am eternally grateful that this is one of the things we are not facing. The agony of wanting your child to live and grow, but knowing that to do so requires that someone else’s child must die to make that organ available – I just can’t imagine it. We say hi to the other Brendan every day when he makes laps around the floor in his stroller and I feel for his family so much.

This was Brendan before he left for his procedure. He had been given Morphine and Ativan just a few minutes prior to the picture so he was pretty checked out.

He came out of his procedure with the breathing tube but the cannula was still there

They got him all retaped and bundled up, hopefully he will have a good night. He gets over the Fentanyl really fast, so keeping him calm and still will be a real challenge.

Trevor stops all of the cute things he is doing to make camera face whenever I try to take his picture now.

I am squeezing and cuddling my little Trevor, making the most of my time with him at home