I guess it is tradition. The day before Gramma is set to leave, something dramatic has to happen. Any time we have a new nurse starting, Brendan does something dramatic. So put those two together and he had to have something REALLY dramatic to do.

So it was time for his ND tube to come out! To be fair, it wasn’t Brendan’s fault entirely. He had been tugging and peeling on his tape as usual and it was a bit loose. Then I got the tube caught on the handle of the recliner chair and it pulled hard enough to just slide out about 6-8 inches. It was too far to be able to put it back safely.
So it was a chaos afternoon trying to make decisions about what to do. We talked to several nurses and they talked to the doctors and we all agreed to try to use the new belly port directly in to his stomach.
We are HOPING that the latest developments will help it work this time. No tube in his nose and throat to gag him. No ostomy to slow his digestion. Stronger core muscles. We just have to hope that his reflux is improved or a trip to the hospital is in our near future.

Super fresh cheek after removing the tape and tube:

You can watch the video of the final tube removal. Poor Brendan had been very upset and he was sound asleep through most of it.

What a day!

We started a slow rate of pedialyte and he seemed to handle it well. After about 3 hrs of stomach feeding, he started to feel some discomfort and was passing a TON of gas. He got pretty upset but got through it fairly quickly.

Trevor was very happy to see his brother without tape.

Just look at this happy scoot!

It was all just for being able to get a picture with Gramma with no tape on his face! He got his HME and some cute clothes for a few cute photos.

Wouldn’t you know it, Gramma tried to pack both boys in her suitcase!!!

Trevor’s already complaining about the leg room, and Gramma tries to tell them they will need to be quiet through security!

Tonight, Brendan is still doing OK. It is too early to tell if this will work, his little tummy is making all kinds of noise. He poor cheek is very bright red and angry. Hopefully he will have a good night and feel good in the morning.

Gramma will be headed to the airport at 7am. It is hard to believe another visit has come and gone. Brendan’s success and progress through this surgery and recovery would not have gone nearly as well without her help, and we are all very grateful.

We are very proud to congratulate Aunt Schnah for the successful defense of her dissertation. Congrats Dr. Schnah!!!

In recognition of her achievements, the boys wanted to celebrate with some graduation themed photos. We did manage to get a couple of real cuties to send to her this morning!

I always try to have adorable pictures for the blog, but it is usually because we are snapping shots all day long and we have 30-60 to choose from at the end of the day and we only pick out the best. Sometimes when I look back, the “outtakes” or the unused pictures are real gems. So tonight I am sharing the best of the outtakes.

Both boys got to play in baby jail today, although Trevor proved that he is going to need even more careful supervision.

He really did pull himself up to here by himself. Tall sturdy objects are being removed from baby jail.

Brendan found the whole thing hilarious!

Overall it was a good day. Brendan did 6 hours on the mist collar. Trevor slept in this morning until after 7am!

Trevor must have had a ton of extra energy tonight. He discovered he likes to dance!

Nothing big to report today. Withdrawal for this week seems to have finally passed and Brendan was feeling pretty silly. He did 5.5hrs on the mist collar and just over an hour on his HME! He is awesome!

He loves his helicopter

He has to sweep the fod from the landing pad!

Trevor will clean it up!

Brendan loves floor time now and he especially loves when Trevor will crawl over and play with him.

Trevor is teaching Brendan all kinds of ways to get in trouble!

That’s why he ends up in baby jail!

Or today he spent a few minutes on the “naughty step”

The boys video chatted with Aunt Shannon and CTB(cousin to be!). Brendan got out of his corner and loved sitting on the couch with reduced wires. Trevor had a secret plan to whisper.

He’s just trying to help his bro!

Gramma’s new favorite video! (she’s the one behind the couch managing Trevor the wiggle-worm!)

Tonight we have a new night nurse in training and she should start working this weekend. We will be back to having only our Saturday nights to cover.