Waiting can sometimes be more exhausting than anything. There was nothing truly significant for Brendan today, just some medication tweaks and trying to keep him comfortable until our meeting tomorrow. I feel nervousness building, hoping that we will have a plan and can move forward and actually make some progress. But deep inside, I expect that we will have a lengthy discussion, followed by a weekend of just more waiting, followed by waiting for tests and for something new to happen. Wait and see.
Every day we wait, he has a greater chance of complications, infection, developmental delay, hospital mistake.. the list goes on. I am scared for him every day, and can only hope that this is going to be a turning point and that he is going to get stronger, pinker, better. An unrelated blood test showed an elevated white cell count today, so now they are on extra close watch for any signs of infection in his incisions or IV lines. So far, no fever or other indications. We just have to try to not be too paranoid and just ….wait.

He was awfully sedated today. He had just a few drowsy moments of interaction and a few complaints.

Little toes poking out of the blanket

He likes his tummy time, it helps his lungs. Having tummy time and petting his beanie baby camel, even better.

Trevor had a date today with a physical therapist from the state early intervention program. Because he was a preemie, he is eligible for a little follow up. He had to get dressed up fancy with coordinated socks to impress her.

He wasn’t real excited about play time with the therapist, although he did talk to her quite a bit with his new “words”. She was very impressed with his progress and says that he is doing everything he should be for his adjusted age, some things he would be doing for his real age and some things even better.
She is excited about his growth and had just a few tips for us to work on.

Our phone rang at 2:30am today. Nothing makes your heart thump harder than the phone in the middle of the night, especially with two family members in the hospital. It was the nurse from Bill’s dad’s hospital letting us know they were transferring him to the ICU. So far today, they have stabilized him but he will be spending another night in the ICU tonight.

Now we just have to continue to hope for the best.

I have been putting off working on the blog tonight because I am not excited about writing about the day. Brendan has just had a miserable night and most of today. He is just so uncomfortable and has just been snowed under with drugs to get him through. Gramma went with me to the hospital and when we arrived he looked like a little storm cloud, just gray and sad.
The doctors decided it was safe enough this long after surgery now to turn him over on his belly on a pillow, and as long as either Gramma or I stood by the bed and kept gently patting him, he was fine like that. But if he was not getting comforted, he was squirming, fussing, or screaming.
He has made a tiny bit of progress, they were able to remove the nitric support and he was down to 50% on oxygen although someone turned him back up to 70% while he was mad today so he was set back on weaning.

I have shown enough frustration with the doctors that they have scheduled a conference on Friday at 2PM so that all the specialists in the same room can go over his condition with us and make a new plan. I don’t have a lot of confidence that they know yet what to do, so hopefully by Friday we will have answers.

Brendan’s beanie baby assistants got a bit gross so they had to be retired to the washing machine and the next team stepped up from the bullpen. Now he has a lizard, a baboon, and a camel.

Brendan also has a new next-door neighbor. It is a cute little girl named Violet that is only 13 days older than him. As rare as a DILV heart is, it was a surprise to find out that she has the same defect and came in to the hospital for her Glenn which was done yesterday. She was an otherwise healthy full term baby and is recovering very well from surgery so far. We told Brendan to pay attention, and let her show him how it is done. Maybe with a girl to impress, he will get his act together.

There have been people on the roof outside of Brendan’s window a lot lately, I wonder what is going on out there. Yesterday it was two guys walking back and forth all day. Today it was one guy working and 7 guys watching.

Trevor is just being Trevor. His biggest trouble to worry about is still just gas pain that comes and goes, otherwise he has really good days and just sleeps so well all night.

He still gets excited for his bath.

I can see why, I need to do some soaking like this too

Mirror baby takes baths too in one of the turtle toys.

All dressed for the day, watching out for his turtle toys.

More new jammies, dinosaurs that read “I wasn’t born yesterday”, plus matching dinosaur burp rag.

Bill just got home from the other hospital visiting his father. He has been in and out as well (mostly in) and needs a new plan too. The whole family needs a break.

I got all caught up trying to get some projects done tonight, and almost forgot to do the blog in time! Today at the hospital was fairly good. Right now, the goal with Brendan is to reduce and simplify. They are trying to wean oxygen support requirements and medications while they wait for him to show improvement. We really want to see him get off of that mask, it hurts his face and head to keep it in place.
He did have an ultimate meltdown midday and required a double dose of morphine to settle down, but then the rest of the day he did fine. I am not sure exactly what sets him off but I am sure that he feels quite a bit of pain for a number of reasons, the mask could be one.

He was enjoying his bouncy chair this morning. I had to bring home 2 of his beanie assistants for washing, they promised to find him a new one for tonight. The puppy was still there to help out.

Trevor just has a few new jammies to show off, he had a pretty uneventful day. He just stayed busy with Gramma with his usual routine!