Out with the Old, In with the New
I had the my feeding tube changed today in the Interventional Radiology (IR) department at Children's Hospital of Philadelphia (CHOP)*. Through the feeding tube, also called a g-tube -- "g" is short for gastrostomy -- I receive medicines and liquid nutrition similar to Ensure. Normally, the 4 cm long tube (pictured above by itself on the left and in my abdomen on the right with a gauze pad against my skin) could be changed at home, but because I have what is known as a "false tract", the new tube tends to end up in that tract instead of in the stomach (not good). So every three months, I go the hospital, where a wire is inserted through the old tube while still in my stomach. The balloon holding the tube in place is deflated using a syringe and the tube is pulled out. The new tube is then slid over the wire and its balloon inflated. To confirm placement, an x-ray of the stomach is taken while a contrast dye is injected through the g-tube.
Piece of cake? You try having someone yank something out of your stomach sometime! Not only that, but getting on the table is complicated by the fact that my knees are contracted and I cannot keep my hips from flopping out to the side. I need restraint ties and several towels and pillows to safely position me. I bring my Hoyer lift from home because it's the safest way to move me. But it does not reach the level of the table, so some careful maneuvering is required!
It's not exactly my idea of fun, but with the help of my nurse and the considerate IR staff (thanks guys -- you're the best!), I get through everything just fine. As for the discomfort from the tube change, it's relatively mild and is usually gone within a day or so.
*You may be wondering why I still go to a pediatric hospital at age 28. The reality is that until fairly recently, few Duchenne's patients reached adulthood. That's obviously changed, but the best clinic remains at CHOP, so doctors, nurses, and other staff are familiar with the disease.