Today was a day of massive stress and setbacks for Brendan. Over the last few days, he has been showing signs of troubles, and it all came together to cause him to fall apart today.
It started very early this morning with his high heart rate, rapid breathing and discomfort/agitation, then he could not maintain his oxygen saturation. They had to use a “muscle relaxant” which is actually a paralytic to totally freeze him so he was not able to fight against the ventilator with his rapid breathing.
That seemed to work for him most of the morning. Then they had to switch him off of the home vent machine and put him back on the hospital servo.
But early this afternoon, even in his paralyzed state, his sats started falling. The nurse had to bag him manually to keep him from dropping fast. Before I could blink, Brendan’s room was full of nurses, respiratory therapists, and doctors all struggling to do something to pull him out of his respiratory failure. His pulmonologist came right away.

Seeing a little panic on the doctor’s face while he was bagging gave me a horrible chill and I had to sit down. I was truly scared for Brendan, and had no idea why he was suddenly deteriorating rapidly before my eyes. At one point his saturations dropped in to the 30’s. Bill left work and joined me at the hospital as fast as he could.

Tuning the ventilator settings and keeping Brendan paralyzed finally brought him up to stable numbers. Blood, urine, and mucus cultures were collected to determine if there is an infection at play here causing the sudden lung issues.

Major setbacks include:
1 – Heavy sedation is once again required to keep him breathing safely
2 – Nitric Oxide has been added again and will need to be weaned
3 – The hospital level ventilator is required again
4 – His PICC line is full of IV medications again

I only took one picture right when I got there this morning, he was already frozen

He is stable for now, but the more he wakes up, the worse his numbers look.

Trevor had a better day with Gramma. I am very fortunate that I know Trevor is safe and being given love in abundance so I can be at the hospital on days of crisis like this. Thank you very much, Mom!

I miss him though. He is very good at making me smile with his cuteness.

Hopefully tomorrow will get us moving in the right direction again. Needless to say, Brendan will not be leaving the ICU for a while.

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.

It was pretty empty at the hospital today. Plenty of patients, but minimal staff and not so many visitors. Brendan lost his smile somewhere today, he just wasn’t feeling great. I held him for a few hours, but it was difficult to get him comfortable and it is going to take a lot of practice to manage the ventilator tubing.

He was hanging out today with his “guard bunny” from Aunt Letty. Hopefully the bunny helps him feel better tomorrow, he has a big move coming up!

Trevor loves to stroll, his arms were moving so fast they are blurry, he looks a bit like plastic man.

Trevor went out and about in his fancy lion socks

It looks like he is about to have a roller coaster ride!

It works every time

Trevor is reading his first Taggies book that Gramma bought him

The thin plot left him hungry for more, good thing it was covered in tags to chew on.