What a way to wrap up the week. Brendan started with a miserable morning and we spent all day exchanging phone calls with his doctors. After scaring me by saying that they were considering an overnight admission to the ICU, we agreed that the best thing to do for him was to push his feeding tube back to an “ND” which means it goes deep to the duodenum instead of in to his stomach. This will control his reflux and vomiting and hopefully make him feel better. The down side is that an ND tube can only be placed with xray guidance. An NG (stomach) tube can be put down by us at home. If he pulls this out or gags it up, we have to go back to the hospital again for it to be replaced.

He didn’t mind the car ride, although I hate taking him anywhere in this heat.

We promised him again that he wasn’t staying. Here we are with a fresh taped face and new tube, heading for the exit.

He was so worn out when we got home. Having an epic meltdown when someone tries to put tape on your cheeks really wears you out.

He woke up in a good mood!

If his bright eyes and big smile are any indication of how he will do tomorrow, then we will be thrilled.

He has had rapid breathing and elevated heart rate with his throwing up, and that hasn’t entirely stopped yet, but it is better. It really needs to improve over the next few days for the doctors to be happy again.

Trevor spent the day with Gramma. Good thing she wasn’t on a plane.

Eins has been feeling a lot better too. He is moving around well again. Trevor loves his dogs.

Jungle meerkat Trevor pops out of his hole to see if it is time for dinner.

Our hard weekend continues, poor Brendan is battling for rest and comfort and it pains us not to be able to do more for him. We ended up holding him for much of the day, he is very tired but just hasn’t been able to get good rest.

We were so relieved when he got a few hours of deep sleep this afternoon.

He was able to relax a little while we soaked him in his bathtub.

He tries really hard to be his smiley self.

Trevor must be picking up on Brendan’s condition, he doesn’t want to nap either. He will just lounge around with his crabbie-peers.

Hopefully the doctors will have some insight for us this week and we can keep making progress.

This is how Trevor “naps” now. You put him down, sound asleep, and ten minutes later you find him like this, trying to turn his mobile on and off.

Brendan is learning a thing or two as well, he watched Trevor try to escape his crib.

Brendan did have lots of time out of bed to play today.

We got some nice hard rain today, with thunder and all. Trevor really liked it.

Gramma even let him splash in the puddles

He likes the splashing on his feet

Cute Trevor print

Brendan’s day was actually pretty hard, but he is such a ham for the camera.

He loves to chew on his “emergency towel”

I told him that he looked so happy, nobody would believe he was sick. So he promised not to smile for this picture.

I am not so sure about this new medicine. I guess it will take some time to know if it is really making things better or if we are just masking the symptoms of something else. It is extremely frustrating. We are grateful for his beautiful smile that keeps us going.