Sunday, May 8, 2016

No more tube!

Friday April 22 finally arrived. This was the happy day that Elsie's gtube was permanently removed! After speaking to our GI doctor late Thursday night and finally receiving permission to remove her tube, I was so excited that I almost wanted to wake her up and take it out right then. But I restrained myself and somehow waited until morning. By some cruel irony, that day just happened to be a rare morning that Elsie slept in until after 9am, haha. She finally woke up and I waited until she had used the bathroom and had a few bites of breakfast before springing the good news on her. 

Our feeding therapists had both warned us that removing her tube might be a little traumatic for Elsie. After all, she has never known life without it. It is a part of her body as much a finger or toe is, so to suddenly remove it might be hard on her. Not painful, mind you, just different and strange. We have been talking with Elsie for the last few months about when she gets her tube out, and talking about how she doesn't need it anymore, but I don't know if she really understood that it would be coming out, for good. So I was a bit apprehensive that morning when I collected all of the supplies I would need to take her tube out. Some parents with tubie graduates suggested having a new, clean gtube available to put into a stuffed animal or doll if the child was upset about losing the tube from their body. I grabbed a new gtube button, a few pieces of gauze, some medical tape, scissors, and a syringe. 

This is what Elsie's Mic-Key gtube button looks like:

The feeding port and balloon port are the parts that are outside her body. The stem of the gtube goes through her stoma (hole in her skin) and into her stomach. It is kept in place by the small, water-inflated balloon that is inside her stomach. The balloon, if properly inflated, keeps the gtube from being pulled out of the stomach. When you want to remove the gtube, either for replacing an old tube with a new one, or to permanently remove the tube like in Elsie's situation, you take a small syringe and attach it to the balloon port. You draw all of the water out of the balloon, and the balloon deflates and shrinks in on itself, and all you're left with is the narrow stem. The stem is easily pulled out of the stomach because there is nothing holding it back now that you've deflated the balloon. It's actually pretty easy to do. 

Once I had all of the supplies ready, I sat Elsie and Evje down and explained to them that the doctor told us we could remove Elsie's tube. I tried to make it a positive, exciting thing. I could tell Elsie was a little bit wary, but with my excitement and Evje's help, she let me lift up her shirt. I deflated the balloon inside her stomach, and gently pulled on the tube. There was a small amount of resistance, but then it came right out. I cleaned her stoma with some water, then rubbed some Vaseline on the surrounding skin and taped a piece of gauze over it to contain any stomach contents that might leak out. We cheered and celebrated, and took many pictures of the special occasion. I offered the new gtube button to Elsie and asked if she wanted to put it in one of her dolls or stuffed animals, but she said "No, I don't need that anymore!"

Last picture of the "tummy tube"!

It's out!

Generally speaking, a gtube stoma closes quite rapidly if the gtube is not in place. It's like when you have your ears pierced, but you don't wear earrings for a long time, and the hole closes. But with a gtube stoma, the closing of the hole happens a lot more quickly. If a gtube is ever accidentally removed, it is advised to get it back in within 20 minutes of removal, because it really does start to close that quickly and becomes very difficult to get back in without medical help. Elsie has had her gtube for almost 3 years, so there was some concern that her stoma wouldn't close all the way on its own and that she would need a surgeon to stitch it shut. However, Elsie's stoma has always been very clean and never irritated; she never had any issues with granulation tissue or other problems that might delay the healing of the stoma. I was pretty confident and hopeful that it would close on its own, but I kept a close eye on it for the first several days to make sure that there was no stomach acid leaking out and that Elsie's skin was protected. 

24 hours post-removal

It is now more than 2 weeks post-removal, and it appears that her stoma is completely closed on its own! She had a very very small amount of leakage during the first hour or so that the tube came out, but none since then. It looks like she has a second belly button where her tube used to be. We're so very proud of Elsie's accomplishments in graduating from her feeding tube, and we love to let her show off her tube-free tummy to all of our friends and family. I'm so happy that Elsie has finally reached this great milestone in her life! She is now free from all medical devices. All that's left is her scars, that remind us of all that she has been through, and all that she has overcome. Elsie is one tough little cookie!


  1. Elsie's momma is one tough cookie, too! We're so proud that you are all part of our family. And we're thrilled that Elsie is finally tubeless!!
    Love you lots and lots!

  2. I am so so so happy for you and Elsie! I don't know if you remember me, I talked to you awhile back about my twin boys. I have not contacted Spectrum Pediatrics yet, because I didn't feel like my boys were ready, but now I am feeling more confident that it could work for them. Thank you for writing this blog, it has really inspired me and it is so nice to know that there are other people out there that have struggled with the same thing! Congratulations to you and your sweet girl!