There is nothing as new and exciting as yesterday to write about tonight. Brendan did 3hrs on Trilogy on the night shift and did super well. He did 3hrs on the day shift today too and did great up until the last 20 minutes and then he was fighting the vent.
He did an hour on the trach collar again and relaxed. His plan going forward is to stick to this same schedule for the rest of the weekend. Then they will work on increasing his Trilogy at night and more trach collar during the day.
We will see if this plan lasts!
The biggest frustration with Brendan right now is that he still has these episodes of distress twice a day – close to 5am and 5pm. He is obviously in some kind of pain and nobody can figure out what it is. In the past, they have just masked it with drugs to make him sleep. We are trying everything to figure out what is bothering him, and why it seems to be on a cycle even though nothing else correlates. We stayed late tonight to get him through the spell and he did finally fall asleep. Apart from that, he had a pretty fantastic day.

We gave him his baboon to keep him from grabbing the trach tubes.

He is good at multitasking though

This is right after the full deluxe spa treatment. All cleaned up with a bath, a massage, new stickers, new bag, new suction tubes, and all new bedding!

After he was done with work, Bill brought Trevor so the whole family could be together.

Bill spent plenty of time spinning the animals on the mobile for the entertainment of both boys.

It was coincidence that the nurse picked out the monkey blanket when we changed Brendan’s sheets and then Trevor shows up in his monkey outfit again.

Bill tries to comfort Brendan during his difficult time.

After lots of rocking and a tight burrito wrap, Brendan finally calmed down and fell in to deep sleep.

Trevor had enough as well!