Brendan had a really bad morning. He was crying when I got there and nothing that I tried to do for the next hour could get him to calm down, even his usual sure tricks. When the doctors came around for rounds, they decided to give him some Ativan and that knocked him out cold for hours.
They confessed that they were really struggling to determine why he was having so much trouble and that they would keep trying things. He was set to go for an upper GI study in the afternoon. They increased his dose of Precedex to help him stay calm.
I got to walk down to radiology with him and help with the GI study. They gave him a barium fluid in a bottle and he chugged it like a pro. Brendan really likes barium. It is pretty amazing to watch the xray and the fluid filling in to his little belly. It did not even take a whole ounce of volume before he had a major forceful reflux event. I was sad to see it happen, but also glad that they caught it “on film”.
The solution for now is to push his NG tube deeper to be an ND tube where it ends past his stomach in his duodenum. This make it nearly impossible for him to reflux since it is past the Pyloric sphincter and directly in to his intestine. Once he can heal and grow and get past his heart repair, they may need to consider a surgery for the reflux. The doctors seem confident though that this is something that he will grow out of on his own.
Brendan stayed pretty sedate all day. At 8am tomorrow morning, he will go back to radiology to have a PICC line inserted again so that the IV can come out of his scalp.

They have discontinued his percussion therapy, but he started his inhaled treatments. This is the pressure treatment, trying to help open up those fluid filled areas in his lungs.

This one is the inhaled steroid.

Trevor had another spoiled day getting “smothered” by Gramma! Another long bubble bath was on the agenda. They have too much fun while we are gone!!

Trevor says “This is my Brendan impression!”

He thinks he is too funny!