I got to the hospital early this morning and the night nurse was getting ready to leave. She looked totally spent and exhausted, Brendan kept her on her toes all night! He is doing well on the NAVA, it seems more comfortable for him. He kept his sats up well, even when he was mad. He just demanded a ton of attention!

So they are keeping him pretty well sedated today. He needs to get some rest to recover and feel better.

Trevorrrrr innnn spaaaaaace

Trevor really likes to chew on Captain Calamari

Trevor’s best friend that he is always delighted to see is Brendan’s old oxygen flowmeter. He says hello to it every morning where it sits on the back of the couch. He is just fascinated looking at it.

Trevor loves to spend tummy time on the floor with Gramma

We didn’t have a good start to this week, so it was good to have a day that was less eventful and more positive. Brendan had evened out and been stable all night and was in a decent mood this morning, he even tried to give me some smiles.

His head was looking puffy and swollen again today, so he got to spend some time in his bouncy chair. Sitting up definitely helps.

Even with a pair of socks on his hands, he is good at grabbing and pulling tubes!

“It wasn’t me”

Today there was a telethon at the hospital, ABC news was broadcasting live from the cafeteria. The news crew came around and wanted to shoot footage of the evening anchors giving quilts to the kids. We declined being on TV, but Brendan still became a bit of a mini celebrity.
He is the very first patient in this hospital to use a technology called NAVA. It has been used in hospitals all over the country for just a few years but it is new to this place and staff just finished training last week. The doctor on rounds tonight is one of the state’s leading experts and thought that Brendan was a perfect candidate.

NAVA stands for Neurally Adjusted Ventilatory Assist. It uses a probe that is put through the nose in to the stomach the same as a feeding tube. The probe on the end reads signals from the brain via the phrenic nerve that initiate breathing and triggers the ventilator.

More details here: NAVA info

NAVA is ideal for helping patients like Brendan that fight the ventilator and so far he has done well with it.

They had to bring in the new vent and switch him out before they could set up the new mode. The old machine is on the left and the new one is on the right. It is going to be tough to get used to the shocking difference.

The truth is it is the exact same ventilator machine, but in order to run NAVA, it needs a software upgrade. The vent he was on didn’t have it. This vent technology is supposed to make it easier to wean him down to a home based vent.

All snuggled up for a nap with the new tube in his nose.

Trevor had an exciting day. He poooooped!! We have been waiting for him to get that taken care of. Once he finally had a good movement, he had a terrific day and got to go play outside. He is still trying to figure out how to wear sunglasses.

He loves to be out and about watching the dogs run around!

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.