Hi there,
Welcome to Whipple World. I have been through just what your are describing and know how frustrated you feel, but believe me it will eventually close up.
My boyfriend had the Whipple in Sept 2007, developed a leak in the fascia stitching that wouldn't stop and he ended having them open it back up, retstitch it and leave the incision open but the sides sort of held together with retention sutures (looked like rubber air hose lines about 1/4" wide) and an incision open down to the internal stitching that I had to pack with prescription enzyme and gauze for almost 2 months after we left the hospital. He was in the hospital for 19 days, we had to stay around the area for another 5 days before they released us to go home to Florida. He was a fairly uncooperative patient about trying to eat, so he also went home with a abdomen incised feeding tube and he had tube feeding supplements for a couple weeks after he got home from the hospital.
I never wanted to be a nurse, and almost fainted the first time they showed me what to do. However, we do what we have to and after a while I got pretty good at it. In fact when we went to doctors locally to have them look at it and see how it was doing, I got really picky about how their nurses repacked it because they weren't doing it right as far as I was concerned. I wanted it done the way I was shown how to do it at M D Anderson by the wound care nurses there. Boyfriend thought that was pretty funny.
Make sure you have lots of sterile surgical gloves and change them frequently. If you are at home, be very careful with keeping the wound clean and washed out. Washing it out is very important to help healing and I had to use a saline solution to wash it when I changed the dressing. My boyfriend did not want to let water run through the incision in the shower as they recommended, but once he started doing that it started healing faster...it helps rinse the slough out. It won't hurt it to get soap in the incision, just make sure it gets rinsed out well.
We had a RX for prescription enzyme cream to fight the slough (dead tissue), some kinds work better than others, and I believe its function was to digest the dead tissue. We had to keep the incision covered and taped closed between changings. My boyfriend is very hairy, so it was easier to shave his chest like they did in the hospital than to keep ripping the hair out with the bandage tape. If you do that though, try to do it while he's showering to rinse any hair out of the incision.
I uncovered, cleaned, using long q-tip type swab to try to pull lose slough out(called debriding), put enzyme in and repacked the incision 2 times a day for a month, then once a day for the second month. Every day I watched the slough and thought we would never get rid of it, but one day it was all gone and I literally cried with relief. As the slough goes away, you will see the incision hole start to fill in, but it won't fill in where the slough is still present. At the last, there was just one small part about 1/4 inch long that was the last slough to go and the rest of the incision had noticeably gotten less deep and filled in with new tissue. His incision was about 9 inches long and I battled the slough down from about 6 inches to nothing, but it took patience, persistence and the sure knowledge that he was better off having me do it at home rather than go to the hospital or doctor every day and chance picking up a hospital infection.
We originally were giving this kind special "silver nitrate?" tape (can't remember exactly), but it didn't work as well at debriding the slough as just plain gauze. I packed the wound with gauze on top of the enzyme and then wet it lightly with saline solution (called "wet to dry" dressing). When it dries the slough adhers to it and when you remove the gauze for the next change of dressing some of the slough will come away with it....hopefully. Very tedious, very annoying, but works very slowly. All I can counsel on this is patience, patience, patience.
You need to keep an eye out for possible infection, so watch for reddened and puffy skin around the incision. At first, I panicked and had the nurses check everything ,but after a while I could handle it myself. The skin looks red around the incision anyway, so just keep an eye on if it looks like it's getting worse instead of better. We had home health nurses coming a couple times a week, but since the incision had to be changed every day I still had to do it mostly by myself. I would alway have them check to see if they thought there was any infection. Home health care called them "wound care nurses"...and some knew what they were doing, and some didn't seem as knowledgeable. Most had never seen either the Whipple surgery or retention sutures. The feeding tube, which was no longer being used, had to be flushed with water every day until we could get it taken out.
One of our biggest annoyances was that we could not get the doctors here to take out the retention sutures once it had healed, and they wouldn't remove the feeding tube either. Apparently, they won't touch another doctor's work. We had to wait until we went back to M D Anderson and have our doctor there do it, but it worked out okay anyway.
Just short of a year later, he is doing well. The "incision" is almost filled in, but still has a slight indention to it. He says it looks awful, I tell him he has no clue how good it looks because he couldn't see it every day the way I could. If you have other questions, please feel free to ask. Hang in there and stay strong.
Donna C in FL