When she had the NJ tube taped to her face, she was still pretty little so she wasn’t purposely using her hands. She only managed to pull it out once which was good because while NG tubes can be replaced by parents at home, NJ tubes have to be placed in the hospital under a live x-ray.
After surgery, there was a period of time where her GJ tube was very tender. We had to stay on top of cleaning it every day to prevent infection. Because there was a tube constantly attached with her continuous feeds, there was often a little bit of pulling that happened. As she started to roll over, she would only roll one way and I think it was because of her tube. After several weeks we were finally in a good place with healing and it didn’t seem to bother her at all.
She ended up getting her SPIO vest at this time from physical therapy which really helped with her movement. It kept her tube anchored close to her body and allowed her to roll and do tummy time much more easily.
We’ve dealt with granulation tissue growing around her tube at times which can be very uncomfortable for her, but we have a steroid cream that we use when that happens!
These days, Ivy is very aware of her tube. When she is being fed she wants it to be uncovered so she can touch it while the food is going in. She has never tried to yank it, just seems to gently play with the flap when it is open. I’m not sure if it is a comfort thing or if it is related to how she feels the food going in. I wish I knew what was going on in that little head! We change her G-tube at home every 3 months. It takes a lot of supplies, but less than five minutes to do. It isn’t fun for either of us. I imagine it is slightly painful for her, plus we have to hold her down which she hates. Once we’re done she’s right back to smiles!
Sometimes I still can’t believe that I am this mom. This mom who changes feeding tubes and wipes up stomach contents that have sprayed out. The mom who knows how to prep and give feeds, and how to care for an open stoma in my child’s stomach. People say “I don’t know how you do it, I never could!” But you could and you would if it was what your child needed. I’d walk through fire for this sweet girl, so if getting an honorary medical degree is what it takes to help her thrive I’ll do it!