We wait nervously for information on days like today, and it seemed to take forever to see anyone on the floor. Their conference must have gone long, and then they waited forever to do rounds on Brendan.

To get to the meat of it, the final decision among the surgeons and specialists is that Brendan is ready for his Glenn in every way except for his lungs.
They don’t like the alternative plans for him, so what they decided to do was to go ahead and schedule the Glenn procedure for approx 2 weeks from now. In these weeks, they are going to give him the “Rocky Training” lung treatment. They are going to hit him with everything they can think of to help his lungs get stronger and healthier and clearer so he has the best chance of adjusting to the new circulation pattern in his system.
If in two weeks, his lung condition has deteriorated, or they feel like in some way he is less stable, they will cancel the surgery and go with one of the other options that involve lots of waiting and growing and time.
There are still a lot of questions that need answering and we will be meeting with all of the doctors to get more information and make sure that before they wheel him to the OR, that we are fully prepared for his recovery process. We should have an official surgery date in the next few days.

He did have a great night last night, mostly because he had a very good nurse. It makes a huge difference. She let him sleep as much as possible and he had about 25 minutes of happy-baby time this morning, even if he was feeling kind of high from a recent dose of drugs.

He fell asleep watching his mobile

Trevor was back to being happy baby most of the day. He spent the morning helping Daddy work from home.

Serious camera face

Per the request of cousin Kayla, I bought a bag of super crunchy kettle chips. If you can’t stand the sound of someone crunching, don’t watch this video, or at least turn the sound off! Trevor was a bit distracted by the camera, but he still thought eating was pretty funny!

There was a hubbub in the ICU today as a new patient was brought in down the hall, so we really didn’t get any new info. We just didn’t see the doctors much. The little conversation I did have gave me a feeling that the pending decision on Brendan’s treatment is swinging from one procedure to another, I am very eager for them to make a final decision. But how final is final, really? By Wednesday, something could happen and send us all on a totally different path.

Sometimes we see Brendan awake and smiling. If the doctors see him like this, they think that he is doing much better. But in reality, only 6 minutes prior he had his ativan shot, and within 10 more minutes of this photo, he was asleep. Spending 2% of your life in a happy state due to drugs is not what I call doing better in any way, no matter how cute he is when he can have these moments (which I cherish).

No holding, patting, dangling, bouncing or singing could calm him when he got mad today although I tried everything.

Once he was relaxed, we had a little nap together.

Trevor was ready for his first social outing (wheeling down the street a few houses to see Bailey for dinner). He got all dressed up cute.

He absolutely would not wear his sunglasses and didn’t want anything to do with his hat either. We thought we would try the stroller without the carseat snapped in, but he really did NOT like it! He just isn’t big enough and we had to lay the seat flat.

He was cranky, hungry and overtired during dinner so we had to come home early. He was so mad in the stroller on the way home that I had to take him out and carry him the rest of the way. Once he had a bottle at home and got in to his jammies, he just needed some rocking time and he fell asleep.

It was Daddy’s day at the hospital today. He spent the whole day with Brendan and even held him for four straight hours to keep him happy. It is difficult now to get him in to a good position for holding, he has wires going to both sides of the bed that don’t give enough slack to take him out. It takes a lot of nurse effort to move him to the chair next to the bed. It will be even worse if he has to have to cpap machine again. He was working hard to breathe today, so we expect that it could be coming any time. He hates it, but if it is what he needs to keep that airway open, it is what they will do.
We are very close to having a decision on procedures. I can’t make up my mind which route I am hoping for, all of the choices have risk and lots of work ahead. I get more nervous as Monday approaches.
I’ll be spending most of tomorrow there with him and will cuddle him as much as possible.

Daddy and Brendan

He really likes to be upright, so they had him in a bouncy chair today

I had a Trevor day today. He is sleeping so well at night, so now he figures he doesn’t need to sleep during the day. He took a handful of 15 minute naps here and there and then finally one 2hr stretch in the afternoon. He is getting funnier every day, he thinks it is hilarious now to watch me eating, especially something crunchy. He was almost laughing at me.

Never a sad Trevor in the sink

Wake up baby!

He is admiring mirror baby

Space Captain Trevor asleep on the job