Today started with Brendan’s CT scan. He came through it very well and was still just a little sleepy from the anesthesia when Gramma and I got to the hospital.
The doctor was there to show us the images from the scan and it was pretty startling to see just how much junky build up there was in his lungs. It is the kind of problem that just looks like faint haziness on the xrays, and it isn’t something that you can hear listening to his chest. But it definitely is significant in his breathing.
They are going to continue the antibiotic therapy. Starting tomorrow, he is going to get percussive therapy every four hours to help break it up and try to drain it out. The buildup is all in the back, so he is going to be spending a lot of time on his tummy to help it drain and release. They are planning to do a bronchoscopy tomorrow to try to get even more information.
He was in a good mood today, probably with a little chemical help to keep him comfortable. His crying was definitely muted and far less energetic than usual.

Brendan spending some time on his tummy. They moved his IV from his head to his foot while he was under anesthesia.

“you’re not coming at me with tape, are you?”

We tucked him in on his favorite side when we left.

Trevor is ready for superbowl sunday with his football burp rag and pacifier

Trying the “Myspace Angle” for a picture to minimize the cheeks!!

Smiley baby!

Gramma tried to comb his “hair” into a mohawk after his bath!!

Today started out with a visit to Brendan. Since Bill is feeling better, he stayed home with Trevor so that Gramma could go with me to the hospital.
Brendan had a pretty good morning. He was agitated a bit when we got there, but once I picked him up and settled him in on my lap, he was happy for hours. He really likes to be sitting up. I think this lets him be the most aware of all the things going on around him, and it lets his back get some cool air on it.
They have ordered him a CT scan of his chest. The doctors are just not happy with the chest x-rays and don’t feel like they are getting enough information. They are going to have to anesthetize him, which means no food for at least 6hrs ahead. So they put him in for the CT to be done at 8am tomorrow.

This is a pretty typical Brendan look

Sitting up the way he likes, the pacifier makes a good place to help hold up his head!

While he was sound asleep, I finally was able to trim his long nails!

He got to spend some time with Gramma too

Trevor had a good day with Daddy. He gets lots of extra attention when Brendan is not around to demand it. There is a running joke in the house. Trevor can be absolutely sound asleep, hanging like a limp noodle in your arms, but the moment you try to lay him in to his bed, he wakes up. Or you put him in bed and within 3 minutes, he is wide awake, talking and asking to be picked up again with his sad little cries. So Gramma says that there are ants in his bed that tickle him when he tries to sleep and then she rescues him!

I don’t know, I don’t see any ants.

It was a better day at the hospital today, in that Brendan was looking better. He had been crying less, and seemed to be feeling better. It is still a waiting game to see if his ability to maintain sats improve. His nurse today had given him a bath and changed his ostomy bag so he smelled much better.
We spent all morning hanging out in the recliner and watching “UP”. He looked all around the room and worked on holding his head up. His latest thing is to really scratch on things with his little fingers.
The GI team decided to start him on Erythromycin, not for its antibiotic properties but because it helps to move food through the gut and they think it will help prevent his reflux. But then they also decided to give him his food continuously again, so I am not sure how emptying his gut with meds will help while trickling food in 24×7. I voiced my concerns, we will see how things go tomorrow.
The biggest problem with continuous feed is that it is so slow, Brendan never gets a full tummy. So by noon today, he was acting like he was starving and got pretty fussy.

Lots of the nurses comment about Brendan’s eyes. Not just that they are so big, but that he tracks everything that happens in the room. He watches people carefully. And when he is mad, he makes eye contact and gives you a look that makes you KNOW that you are on his list.

He does get some rest, he really likes his right side

A little bit of calm Brendan time

Trevor was a good boy today. We noticed that seahorse kind of had the same cheeks!

“Hey, that is not my brother!”