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!


Good afternoon from the East Coast! Oh “boy oh boy” you sure have your hands full! I too question the use of Erythromycin for Brendan…it has a double edge to it. I see their reasoning, but in my experience in peds, stomach pain has been a very frequent side-effect for the little people. I hope they clearly explain their using it and reassure that Brendan will not have additional abdominal pain. Again, your boys are so lucky to have you as their parents. You are their best advocates and couldn’t love them more!! Prayers, love and many, many hugs!!! 🙂