Success!

Success!

As I've mentioned before, changing my feeding tube is something that could ordinarily be done at home, but due to some issues (see here and here) with the tube going into the wrong place, I've been having it done at the hospital, where proper placement can be confirmed by x-ray.

Today, for the first time in almost five years, I had my nurse change the tube at home in my own bed and it was a success! Sure, I had my doubts until we flushed the new tube with some water. When that didn't hurt and I felt the water enter my stomach, I knew we were in good shape. I felt some tenderness in the area near the tube, no doubt because the old tube didn't come out easily.

But I was relieved the tube change was successful. I had my nurse roll me on my side and I went back to sleep. It may have been early, but I already knew it was going to be a good day!

Graduation Day

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!

Out with the Old, In with the New

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.