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

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.