Brendan had another day of just moderate agitation/irritability with no real explanation. His heart rate stayed high and he was breathing rapidly. He still was having some reflux issues.
The doctors realized that they should probably give him his Prevacid orally instead of in his NJ tube or else it would be totally bypassing his stomach and not getting a chance to work.
When we called in last night, they were so pleased with what a good night he was having, so we were really hoping to see him having a great day.
He won’t be able to come home until we can all figure out what is going on with him.

Gramma visited today so she could have a chance to “smother” Brendan

Brendan likes to get his “teeth brushed”. This little sponge on a stick is great for cleaning his dry lips and gums. But while cleaning him up, he really likes to lick and chew on it like a lollypop.

Getting Brendan all tucked in when we left. He had settled down a bit with Gramma holding him and hopefully he was able to get some rest.

Trevor slept a lot today hanging out with daddy so he had energy for some tummy time.

Trevor is now totally ready for walks outside, he has a hat to protect his bald little head!

This morning we had to take Trevor to the doctor for his next Synagis shot. He wasn’t real happy about it! He weighed 13lbs 15oz!!!!

Then Gramma and I went to the hospital to see Brendan. We had hoped that if he had a great day, he could come home as early as tomorrow. But when we walked in, he was in bed looking awake and a little concerned. His heart rate was 210 and he started to cry when he saw me. After that, he just could not get settled and comfortable and his heart rate skyrocketed to the 220’s.
The doctors still believe that it is the damage in his esophagus causing his pain and that he needs to heal. He had a few episodes of vomiting so the feeding tube is slipping up in to his stomach some, because he is still able to bring up formula.
They were taking him down to radiology to push the feeding tube deeper to be an NJ tube (NasoJeJunal) to make it more stable. They had to dose him some Ativan to get him calmed down so there will be no coming home tomorrow.
They also think his heart rate could be from coming off of the Precedex too quickly after pulling his IV out.

This was Brendan before he started his meltdown. He threw up on his bulldog beanie baby so they brought him a new one. We had to have a little talk about how this will not be the case at home!! If you throw up on your toys, you do not get a free replacement!

This was after he was doped to relax

Gramma continues to spoil Trevor. She bought him a BIGGER anteater in order to try to control the ants in the bed problem! This one went straight to work

This anteater likes Trevor

Trevor tells the small old anteater “You’re Fired!!”

I can’t look at this without laughing

We are going to hope that Brendan’s change in feeding tube will give him a much better day. He really needs to heal so we can get him back where he belongs.

Gramma got a super stylish haircut today on top of it all! Figures she would find a nice stylist 1800 miles from home. Now she has the same problem as me!!

I am not sure why we think that we can plan for anything, the only plan to count on is the plan to change your plans! Today they have decided to cancel the catheterization for Tuesday. It isn’t that I disagree with the new approach, it just is amazing how many times things keep changing!

The idea is that Brendan is not ready for his Glenn procedure, he would be considered high risk. They want his lungs to be as strong as healthy as possible, and they want him to not have any other ongoing medical issues when he goes in to his repair. So instead of taking him to cath on Tuesday, it is time to focus on taking care of his reflux and getting him bigger and stronger. Ideally, he will lose the feeding tube and eat from a bottle before surgery.

Since that is the case, he may come home very soon. He had a stellar day today after a pretty bad morning. If things go perfectly, he will go 48 hours without any issues and he could come back home as early as this weekend! He will be given about a week to heal his esophagus, eating only from the ND tube to keep food out of his stomach and prevent reflux. Then we will start to try thickened formula to see if he can keep it down.
We are very excited to see Brendan feeling more comfortable again and we can’t wait until he can be with his brother. We take much better care of him at home!!

This is right before Brendan pulled the IV out of his head. That is five IV’s in ten days! (He won’t be getting a new one unless there is a need for it now)

He is happier without the IV

This is what they did to his poor little cheek

Trevor continues to just be awesome. He got an upgrade, no more balls of socks in his swing, now he has monkeys.

Cute rocketship pajamas. Trevor is wearing all 6mo sized jammies now, amazing how much they all shrink when you wash them!

Relief? An anteater in bed will surely take care of the problem that keeps Trevor from sleeping.

Or the anteater will mistake Trevor for an ant! Or it is a zombie anteater trying to eat his braaains!