Tomorrow A is getting her g-tube (feeding tube) removed. This is a huge deal. She has had a feeding tube since she was 2 days old: for the first few months she had an NG tube (a tube going through her nose to feed her), and then the g-tube inserted in her stomach when she was about 6 weeks old. We have worked so hard to get off the feeding tube; it seems surreal that it's actually happening. (She is also getting her trach scoped, but really, I have no expectation that her ENT will say it's ready to come out.)
She got the g-tube placed because she never got the hang of coordinating nursing, swallowing and breathing all at the same time (all complications of her vascular ring, which led to tracheomalacia). When she was in the NICU, she WOULD nurse a bit (or drink pumped milk from a bottle) but it would take her so long....about half an hour to drink half an ounce. Too long. I remember the doctors and nurses in the NICU telling me that she might need a permanent feeding tube placed, but I didn't really hear them. The OT (occupational therapist) even showed me a film, showing a child with a g-tube and how easy it was to incorporate tube feeding into daily living. I watched with half an eye; I didn't want to believe that could be my daughter. But it was, and soon enough I had to acknowledge that she wasn't going to be eating on her own any time soon, and I didn't want her to be in the hospital forever.
She got the g-tube placed on August 10, 2006....and the last time we used it was July 18, 2009. Therefore, when it is removed tomorrow, she will have had it for almost exactly four years, and it we will not have used it for almost exactly one year.
So.....goodbye, g-tube! I won't miss you. I won't miss dealing with your leakage every day, with A's clothes wet and stained from stomach fluids leaking out. I won't miss having to order supplies every month from the home health agency (first Pediasure, Kangaroo feeding bags, extension tubing; in this last year only gauze and extra Mic-Key buttons). I won't miss having bulky gauze visible under A's clothes. I won't miss A lifting up her shirt, exposing the button, and having other people do a double-take.
But thank you, g-tube.....for saving my daughter's life. If it weren't for you, she would not have gotten the nourishment she needed to live and grow. It was a hard decision to get you, but it was the right thing to do. And now it's time to say good-bye.
Out of the ICU: Ups and down
17 hours ago