It is wait and see time in the hospital now, Brendan had some pretty serious inflammation in his esophagus from his refluxing, so it will take some healing time until we know how well he does with it being prevented.
They decided not to do the PICC line insert after all, his antibiotics are done today and they are going back to oral doses of Lasix instead of IV. They can always order the line later if needed.
The goal for him is to continue to wean him to all off of the things he can only have in the hospital, like Ativan and Precedex, and manage him with Tylenol and home oxygen equipment. If they can get him stable that way, he will come home again. They did switch him off of the high-flow air blender to the regular cannula tonight so that is a good first step. It is a shame that they made his poor little cheek bleed when they took the tape off.
He is still scheduled for his Tuesday catheterization, we will see what information that will bring about surgery. Gramma has extended her stay until Thursday the 16th so that she can be here until after his procedure to help care for Trevor.

Brendan was still pretty cranky this morning, but settled down and had some happy time after I held him a while. He gave me a few cute smiles!

Brendan says “This is my Trevor impression!!!”

Trevor had a real adventure today, he walked outside with me to get the mail!! It was real bright outside, so he had to put his sunglasses on!!

The sunlight!! He needs a hat to protect his bald little head!

Trevor really loves his bath time. This is the guilt trip he lays on Gramma when it is time to get out. He would float all day if he could!

Trevor just can’t get any rest in his bed. First ants, now monkeys!

Trevor “taking a nap” in his crib. I love the reaction to the sound of the dogs bursting through the dog door at the end.

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!

With Bill back in the office and Gramma with Trevor, I spent the morning with Brendan. Bill went to visit him after work. Brendan was a serious crankasaurus today. He was awake for hours and hours and just couldn’t seem to get very comfortable. He pulled the new IV line that they had put in to his foot yesterday so there is one back in his head again.
They have decided against doing a bronchoscopy. The pulmonologist came to see me and said that the risks and stress of doing it outweighs the benefit of having the information at this point. They will give the other treatments time to work first.
She said they are going to add an inhaled steroid to help reduce the inflammation and they are going to continue the percussive therapy (which of course Brendan LOVES).
So far, they are going to stay on track for his other procedure, we will see how it goes all this week. The general feeling is that he will not come home again until after his major repair.

Trevor got spoiled. Nothing new there!

A little bit of food coma

Trying to burp a limp noodle baby

Brendan’s silly faces he makes when he can be happy are hard to photograph, I didn’t have enough hands and my phone camera wasn’t fast enough!

Gramma accidentally clicked to take video while taking pictures today. This video is ultra short, but I like Trevor’s little grin.