Graduation Day
No, I haven't finished my master's degree. For that, check back next spring. Today was hopefully the last time I had my feeding tube changed at the hospital. Normally, a g-tube "button" such as the one in my stomach could be changed at home by a nurse. However, about a year or so after I had the surgery to place the tube, I developed what is known as a "false tract" and when we tried to replace the tube, it ended up going somewhere in the abdominal wall instead of in my stomach. Obviously not a good thing and let me tell you, when we flushed the tube, it hurt like hell!
On a couple of occasions, we all thought that the false tract had closed, only to find out that it had not. Then I would have to get to the Interventional Radiology (IR) department at The Children's Hospital of Philadelphia (CHOP) as quickly as possible so that the hole in my stomach would not close up.
Eventually it was decided that I would just go to IR on a regularly scheduled basis (every three months), where they would change the tube over a guide wire and then introduce a contrast solution so that they could check placement. However, it is always a bit of an ordeal. I have to get out of my chair and lay on a table. As I don't get picked up, I bring my Hoyer lift (my lucky nurse has to lift in and out of my van). Then it takes a while to position me on the table. When I first started doing this, it caused me a great deal of anxiety, as I was worried about hurting my legs, which are extremely contracted. Now, I don't worry at all. I know that my nurse isn't going to hurt my legs and the IR staff is always helpful in positioning me. They take their time and now know exactly what I need -- towels, pillows, straps, etc. -- to be comfortable.
But after three years of doing this, the doctor is confident that I should be able to change the tube at home again. So today, I had my nurse try to change it while I was on the table in IR. Everything went well, so it looks like we're good to go. To celebrate my "graduation," I decided to get a group shot of me with some of the IR staff. Here I am with (clockwise, from bottom left) Dr. Anne Marie Cahill, Corinne Leitheiser, Karla DiTomasso, and Jayme Whitaker. You'll have to excuse my open mouth -- it is such a great photo of everyone else that I had to use it.
Although they are a nice looking bunch (the female staff, anyway), I would still rather be able to have my g-tube changed at home. Come November, it looks like that's going to be possible. Wish me luck!
