Brendan did not move upstairs today. Due to what is believed to be effects from withdrawal and possible reflux, Brendan has been rocking the boat again a bit today. His heart rate was elevated, his respiratory rate was very fast and he was just agitated and uncomfortable. So they would not let him leave the ICU yet.
Possibly Saturday night, his feeding tube pulled back a bit in his stomach and his formula was getting in to the gastric area instead of the duodenum that helps him prevent refluxing. Yesterday, they pushed the tube back in deeper and checked via xray again to make sure it was in the right place.
His work of breathing may also be that he is not compatible with the LTV1000 ventilator he is on. It is the most commonly used at-home vent machine but it might not be appropriate for Brendan’s needs. The pulmonology team will determine if he should switch. There is also the likelihood that instead of going to the 6th floor, he may move down the street to a smaller acute care hospital where he would have nurses with more experience with his multitude of issues. We would get all of our trach and vent training there instead.

The physical therapist came in today and helped work on positioning with Brendan. We got him comfortable on his tummy with his new boppy pillow because tummy time is supposed to be good for his lungs. He took a nice long nap this way.

I had to leave the hospital fairly early today because Trevor was misbehaving too. He was very agitated and uncomfortable and was refusing to eat his bottles without a big fight. I called the pediatrician and they asked me to bring him in. He has been dealing with gas and constipation issues and they just had gotten unbearable to him. Other than glycerin suppositories, simethicone gas drops, and baby prunes for breakfast, the doctor recommended a tsp of dark karo syrup in his bottles to help clean him out. That touch of sweet molasses-like flavor in his milk made him want to drink it too, and it should help things start moving for him.

After his first sweet bottle, the combination of overtiredness, sugar high, and silly Gramma-antics were too much for him!

Captain Adorable definitely had the ants bothering him today.

This really proves that the pictures of the boys could tell any story that I want them to tell. His giggle fits and bright smile truly don’t reveal the overall day that he had, but they captured that happiest moments of the day.

Trevor’s guard bunny is trying to make sure he sleeps longer than 10 minutes.

After seeing Brendan make such good progress last week, finally, it was really hard to see him taking a step backwards again. Hopefully we will get both boys feeling better so that they can have more play dates.