It is early in the evening but I have way too many pictures already so I am getting the blog done so that I can get back to the hospital. The schedule that we have been keeping is rough, but it has been working out very well and I firmly believe that Brendan’s progress is due to the fact that we have been by his side the entire time. If we couldn’t be there, they would have just kept him sedated to keep him safe. They run for the morphine the moment he cries.
So this is the way it works in a cycle.
7:00am – 1:00pm – Bill at hospital, me at home
1:00pm – 8:00pm – Me at hospital, Bill at home
8:00pm – 7:00am – Bill at hospital, me at home
7:00am – 1:00pm – Me at hospital, Bill at home
1:00pm – 8:00pm – Bill at hospital, me at home
8:00pm – 7:00am – Me at hospital, Bill at home
This way we each get half of the daytime with each of the boys and we alternate who has to stay overnight. And Gramma spends the whole day keeping Trevor on his routine so he doesn’t get thrown off! (and spoiling and smothering)
Today I guess his routine included exploring Brendan’s bed while he was away. He was caught, don’t tell Brendan!
He says “This is the one that Brendan like best, you push right here”
Today was special though, Gramma and Trevor headed to the hospital to visit Brendan. This picture looks to me like Trevor is saying “Gramma, can I borrow some money to take Brendan to lunch?”
“Brendan hasn’t seen me in 4 days, do I look cool enough?”
Meanwhile, Brendan tries to take a nap. He normally sleeps on his sides, but the hospital mattresses seem to be made out of steel and brick so it is too firm for him to get comfortable. Sleeping in the bouncy chair almost works well.
Brendan gets smothered too.
Brendan loves to chew on the little saline port for his ventilator circuit.
He is silly
The good news came down today. Brendan had several more good huge poops so the doctors approved food. He starts on 5ml per hour of clear pedialyte to make sure his system can handle it and he will slowly transition to his formula and increase in volume until he is on normal daily feed. Yay!! Brendan!!!!
Brendan thought “clear to eat” meant Daddy’s french fries.
Gramma gets in on smothering Brendan too
Trevor just wants to know what Brendan’s buttons do
Brendan says “They are cool to peel and pull, you can have one too, bro!” (The nurse actually had to give Brendan an extra sticky lead to play with because he would not leave the real one alone!)
Trevor thinks Brendan gets all the cool toys
Brendan says, “This one is cool to try to chomp”
Brendan will be OK, Dr. Trevor is in the house
“Is this thing on?”
It was a very good day full of forward progress. Brendan is off his IV sedation completely and on his home med schedule. His TPN is being weaned as his tube food is added. His IV in his hand is gone, he just has the PICC in his leg. He did 4.5hrs of sprinting today and was awake for more than 6 hours straight.
We want progress to keep moving this way!
