Still On For Surgery Tomorrow

Check in is at 5:30am. Now that we've finally got the VAC, we were really hoping they'd give the skin more to heal before going into surgery. But they don't want to delay removing the infected mesh any longer, and say they can just cut away any damaged tissue.

Another Week Gone By

Karen only just got the wound VAC late today. We typically have very few issues with health insurance, but every now and then, to authorize coverage they want to hear something very specific from the doctor. If we had known it would take this long, we would have tried to pay out of pocket and just fought the insurance over it later. They did finally authorize the wound VAC Friday, but the device had to be shipped from the manufacturer, and it was too late in the day to ship it before the weekend. So it wasn't shipped until Monday, and didn't arrive until today.

The ostomy bag they had set us up with last Tuesday turned out a bit disappointing. It didn't stop the wound from opening up more. I'm not sure why we thought that would do the trick if all the stitches and glue we've tried in the past hadn't worked. The wound also drains out of places that look healed, so it was also hard to position it in a way that would catch all the drainage. The wound VAC is a much wider seal, and even without the added health benefits, it helps immensely with the drainage. It would have saved us so much trouble over the past week. As it is, the surgery is only a few days off now.

The goal for the VAC was never to heal the wound closed. I don't think it was impossible, and that would have been great, but it really did seem the body wasn't going to allow it with the ongoing infection. The goal, rather, was to heal the skin around the wound so that it could be reused instead of removed during surgery. If it were helping, the surgery could have been pushed off to allow further healing. Now there probably won't be enough time before the surgery to make such a decision.

In the end it took a whole week to get the VAC. It might not have made any difference getting it earlier, but this is one of the few instances where I feel truly let down by the system. The doctor let the resident write up the order. The resident took too long doing it. Then the insurance wouldn't accept anything from a resident. After everything had been approved, rather than having one of the devices on hand, Mayo Clinic had to order it from the manufacturer. I can only imagine how frustrating this would be for someone losing a foot to an ulcer.

More Excitement

All of Karen's stitches have torn themselves out. The stitches themselves didn't break; you can still see the loops on one side of the wound, but the other half have been slowly tearing right through the skin. You can see the path they took on the way through to the other side. I thought about including a picture, but figured it might be too much. Some have big ugly paths that widen as if they went quickly taking more skin with it. And others have small narrow straight lines for paths, as if they slowly worked through. All but one stitch is left. Karen called yesterday to tell the surgeon the wound had opened back up again, and to see if he wanted to put more stitches in. But when he returned her call he said when he had seen the wound last week, he knew he couldn't put anymore stitches in. Same with staples, the skin just wouldn't hold them.

Karen felt we should just cut the little loops and pull the stitches out ourselves. I was a bit hesitant, but agreed to help. I was mostly worried someone would give us grief about doing it ourselves, so I took some pictures first as proof they weren't holding on to anything. They were just loops on one side of the wound, dangling there. It went well, but after a day of thinking about it, and after seeing the wound so close up, I didn't feel as if the doctor had realized how much the wound had changed. It's a horizontal cut, but the distance of the vertical opening was probably an inch across. The only time I had seen it this wide before was in the hospital when Karen was swollen up like a balloon. The mesh was also folding up on itself; it reminded me of brain tissue. I called this morning and they agreed to see us. The surgeon took a look at the wound and said it was almost as if the body was trying to force the mesh out. Then he brought up his phone and said, "Would you be available for surgery... this Thursday?"

He said it's a full day of surgeries, so he would have to fit us in later in the evening, but we needed to do something. Of course we said we were free and willing. He said he would have to remove a lot of skin, and it would be an even tighter stitch. He paused, thinking, and said if we couldn't come up with something, then we'll have to do the surgery as soon as possible. He had a brief discussion with another doctor and he stumbled upon the idea of using a Wound VAC to help heal the wound. VAC stands for Vacuum Assisted Closure, which sounds a bit rough, but actually provides quite a few benefits. One of which is drawing blood flow to the area for faster healing. It typically takes two to three days for the insurance company to OK such a device, so he brought in a wound nurse and we came up with a temporary solution.

We're now using an ostomy bag around the wound until we get the prior authorization from the insurance company for the VAC. This will hold the wound together preventing it from opening more, and it also catches all the drainage Karen's been having. And there's been so much drainage. With an open wound the JP drain isn't able to hold suction. We've been changing the bandage every four or five hours when awake, and it's completely saturated. Since the catheter wasn't helping much, and now with the temporary solution and upcoming Wound VAC, they could remove the catheter. This made Karen happy. Every little tug or bump on the thing hurts. It's literally just a tube they poked in through the skin and pushed over to an area near the wound. The surgeon says if the VAC is working, he may even push the surgery back a bit further to allow the skin more time to heal.

Two Week Follow Up

Just last night Karen told me quite defeatedly that it didn't seem like anything was improving. Her digestion is returning to normal, but her pain level was about the same. If anything, the pain had gone up some. The wound keeps opening up despite being being restitched and reglued. And reglued, and reglued. Today we had our two week follow up appointment with the surgeon. He says the infection is what's causing the wound to repeatedly open, and said the team felt that no amount of stitching or gluing would keep the wound closed at this point. And if it won't close, it won't heal. The antibiotic irrigation can only do so much with an open wound, and new bacteria will continue to enter from the skin; even healthy skin is full of bacteria.

The solution seems to be another surgery to remove the mesh. Since the area around the mesh is also contaminated, they can't just replace the mesh with a new one. This would mean there'd be one surgery to remove the mesh, and a different surgery, after everything has healed, to place a new mesh. Then you have to hope the new one doesn't get infected. Since Karen already has so much scar tissue inside her, and due to other cancer related issues, they are trying to avoid surgery as much as possible, and will simply remove the mesh without plans to place a new one. As I mentioned before, the muscle that was removed with the cancer will never return. This means there will essentially be nothing between her intestines and her skin. After eating, her intestines could literally bulge out of her abdomen. This doesn't seem to be too much of a concern since the double mesh placement from before already looks like a bulge. It also means hernias will be a serious concern, and it's possible she will have to be put on activity restrictions for the rest of her life. The upside to all of the scar tissue building up around her intestines is that it may help hold everything in place. There are too many factors to know how much of a concern it will be. He said they will do an evaluation after the surgery to decide about activity restrictions.

The surgery has a tentative date of April 1st. If only it were an April Fools' joke. Karen feels although it's not the expected result, this extra time will give the wound another chance heal and close up on it's own. Oh, and the expected recovery time? 2 to 3 days.

One Week Later...

Today was the second time we've been back to Mayo Clinic since we were discharged Tuesday. Irrigating the wound with antibiotic has turned out to be more trouble than we expected. Three times a day we are suppose to "install" the antibiotic gentamicin through the catheter, let it sit for 30 minutes, and then drain it back out. The problem is the wound keeps leaking. After being stitched up, it was sealed airtight with a glue called Dermabond, but it just won't hold for long.

After leaving the hospital Karen had been going to the bathroom at least every hour or two, which not only meant a poor night's sleep and a zombie‑like Karen, but a lot of sitting and standing, and bending at the abdomen, which we believe to be the cause of the glue failure. The first of which was the day after being discharged. I called the next morning and they got us in by 9:30am. They peeled all the Dermabond off, put three new layers on, and sent us home with two more Dermabond applicators. This and a little New Skin got us through until last night when the whole thing started to peel off. Dermabond is only suppose to stick for 5 to 7 days, so at that point it's just doing what it's suppose to. We peeled off the glue and tried covering the wound with plastic wrap to see if that would hold the antibiotic in, but it didn't. So we called again this morning and once again they got us in right away.

The wound had started to pull apart again. The doctors say it's just the elasticity of the skin that's caused this and nothing to worry about. This time they took out all the old stitches and put in more much closer together and sealed it with Dermabond again. We're waiting 24 hours to resume the antibiotic irrigations. Hopefully it will hold up better this time around. Karen's finally starting to gain some normalcy as far as bathroom frequency goes, so that might help as well. She tried backing off the laxatives a couple days ago and got worried she was getting constipated, but right now she's only taking metamucil and things seem to be fairly regular. Her pain level has been pretty consistent, which is disappointing as we were hoping for that to have improved by now.

We have follow up appointments with both the surgeon and the palliative team next week. I expect things will have improved some by then. In the meantime we have home health nurses visiting a couple times a week to take Karen's blood pressure and check for fevers and such. She says it feels wasteful having someone come out to check on her, especially since these are things we could check ourselves, but I guess it's for the best.

Discharged

I got a chance to ask the doctors about the catheter they put in and what I overheard. They said "salvage" is the medical term for treating the infected mesh (or organ, or tissue) as opposed to replacing it. It doesn't imply impending doom, or have anything to do with the odds of success. I asked how likely it will be that this will save the the mesh. They said there really isn't very much data for this thing, and most of that data actually comes from Mayo Clinic. But there isn't enough of it to come up with something as specific as odds. They do, however, think it's reasonable to expect this to work. But even if the odds were stacked against us, the alternative to trying to salvage the mesh would be to replace it, and they said that's something they'd really like to avoid with Karen.

They showed us how to flush the wound with antibiotics, and set up home healthcare to visit us at home. They've also decided against the IV antibiotics they had originally planned, stating that Karen seemed to be in good health and showed no signs of the infection moving from the wound into the rest of her body; she hasn't even had a low grade fever in quite a while. Unfortunately, the antibiotic flush is something we're going to have to do three times a day for 30 days.

Karen's pain is still a bit elevated, around a 4 or 5 out of 10. When the palliative team visited this morning, I feel Karen was too focused on describing what she thought to be the source of the pain, than the way it was feeling. They told her increasing the dosage of the patch wouldn't help with the pulling from the catheter or pains from the sutures themselves. Since then Karen has mentioned a dull ache, which is certainly something that would have been helped by upping the patch dosage. Luckily they prescribed oral "breakthrough" pain medication she can use frequently if she needs to. And I'm also sure if we called the palliative team they would just up the dosage for us.

She's getting up less and less often at night, and seemed quite awake today. Food is still going through fine. And more normalcy seems to be returning to her life. Everyone seemed to think Karen was ready to head home. The last thing they were waiting on was a confirmation from the home healthcare provider before discharging us. They sent us home with a bunch of prescriptions, although most of them were just over were counter the treatments for constipation. We got discharged around 5pm, but with filling the new prescriptions and packing the car, we didn't make it home until after 7. It sure is a relief to be home though. It's a little scarey to think about how 2 to 3 days turned into 2 to 3 weeks.