Lucas Camilo

Lucas gives the finger to United (we swear we didn't put him up to it)

Starting early this morning we jumped back into the ring with United Health Care and have been on the phone and talking with various people at the hospital most of the day. There’s nothing new to report at this point, but with lots of separate fronts of attack underway we’re hoping for a resolution in the coming days that will allow for Lucas to be home by the end of the week, if not sooner. For now, we won’t go into details and instead focus on another one of Lucas’s health challenges.

A few weeks back we gave an overview of Lucas’s tracheostomy and the breathing troubles that led to surgery. The trach is a very visible display of what’s tough for Lucas at this point in his life but he also has a more inconspicuous accessory that doesn’t get talked about as much: the gastrostomy tube or g-tube.

Lucas has come a long way since the early weeks of his life, but he still isn’t ready to feed orally. Therefore, the g-tube provides a direct passage into his stomach for the breast milk that gives him the calories he needs to grow. He had the surgery to place the “Mic-key” g-tube at the same time as the tracheostomy and it’s healed nicely, much like the trach. The device itself is pretty straightforward: a tiny balloon on the inside of his stomach holds the entry point (or “button”) in place, and the tube can be connected or disconnected very easily to the button. The milk is then pumped through the tube (about 2.4 ounces every 3 hours for a total of about 19 ounces a day) and digested by Lucas as if it had arrived via the traditional route of the esophagus. (Check out the video at the end of this post to see the g-tube button, which is on the left side of his belly.)

The insertion of the g-tube is a temporary course of action as Lucas continues to develop his oral feeding skills. His suck is getting stronger and more consistent everyday, and if that were all it took he’d probably be ready to go. But of course you have to be able to swallow to get the food down and Lucas is still slowly developing that reflex. At this point he doesn’t swallow enough to be able to keep down all the secretions that people build up in their mouths and noses everyday, and therefore we frequently have to suction the spit and mucus from his inside his cheeks, nose, and the back of his throat. He also has a weak gag reflex meaning that if milk were to start to go down the wrong pipe he wouldn’t be able to cough it back up, making him a risk for aspiration (i.e. having milk go into the lungs, not good!)

So for now Lucas will have a feeding pump when he gets home and will continue to receive breast milk eight times a day though the g-tube. It’s fairly easy to take care of and maintain, and we can continue to increase the feeds to help him put on weight. At the same time, we’ll be working with occupational therapists to continue developing his suck/swallow/breath coordination and especially to practice swallowing so that he’s ready to eat through his mouth someday soon.