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.
It never gets easier to leave the boys, especially when there is a worrisome issue. My finger was on the change button to extend my return ticket several times. Tonight Brendan did very well, and I hope that he will do fine using his new port.
Foiled again… I couldn’t sneak the boys out, even though they were in their disguises!
I always leave a piece of my heart in AZ when I go home. But I need to go home to the other parts I am missing when I am here.
Thank you, Tiffanie and Bill, for taking such wonderful care of Brendan and Trevor with such love and devotion. I am so glad to have been such a big part of their lives during all of the trials and accomplishments.
Love to you all, I shall miss you!
Gramma XXXX
🙂 It’s always good to see Brendan’s whole little face. Hopefully his stomach is strong and can handle his food – maybe, as you say, without the tube down his nose and throat it will help him not gag so much. Go Li’l B go!
Trevor’s happy scoot is hilarious. He is going to need extra padded diapers though if he plans to get around that way – he clears some serious air!
Gramma will be back before you know it boys!
“Happy scoot” – Trevor, you’ve not yet seen Disney’s “The Wind in the Willows”, and Mr. Toad’s “I’m a motor car!”, but your “scoot” brought that memory back, and I got a good chuckle out of it. 🙂
Brendan, all these weeks you’ve been trying to get rid of that tube, and tape. Well, Grandson, you’ve got that wish now, and I don’t know if it will help, but my prayers for you now, are that this time they are gone for good! It’s about time the world saw that handsome face, without tubes and tape! 🙂 🙂
Boys, someday you will come to understand just how blessed you are to have the parents you have.
i love the shirts! it is great to finally see brendan sweet little cheeks without any tape as well as some amazing sprints from the vent. lets cross our fingers and pray that brendan learns to love food in his tummy sooner than later! it would make life a lot easier!
Good evening from the East Coast! Guess by now that you have done a head count and Gramma went home without the extra luggage that she purchased at Walmart the other day! Hope her trip was uneventful. Fingers are crossed that Brendan can continue without the NG tube!! Go Brendan!!!! Trevor, you are quite talented with your “scoot” maneuver. Very impressive! Cannot believe that next month, the boys will be one year old. Wow!! Thought about that again, wow!!! You have come a long way Brendan and Trevor!! Hugs!! Prayers!! and Love!! 🙂