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.