We've both been pretty happy with Karen's release the day of the surgery. We already had a prescription for fentanyl patches and another for oxycodone - to help with breakthrough pain - but the surgeon had also prescribed a 5% lidocaine patch. It's a local anesthetic, which means it just affects the area it's applied to. He had said to cut strips and put it on either side of the wound. He also gave us a prescription for antibiotics.
We tried to get them filled at the hospital pharmacy before we left, but some issue with the insurance was stopping the lidocaine patches from being filled. I assumed we needed a preauthorization and left a message with the doctor. Remarkably, they found us in the hospital before we were completely discharged, and said that for some reason it's almost never covered. After all the delays with wound VAC, I was content paying out of pocket to have the painkiller now. It was going to be almost $100 for 10 patches though, and one of the doctors suggested we wait until tomorrow to see if Karen had $100 worth of pain.
The day after was actually quite painful for Karen. She was using the breakthrough medication as often as she could, which was every hour. I am willing to bet, if we had been in the hospital, they would have had her on a pain pump administering dilaudid. Karen quickly decided it was more than $100 of pain. I called a couple pharmacies to check stock and compare prices. Walgreens suggested I check GoodRx.com. The site not only compares drug prices at different pharmacies, but gives you discounts on those drugs. We managed to fill the prescription in about an hour for only $34.14. There were no charges to use the site or get the discount. What a great find. We've never had a prescription not covered before, and with a couple days of back and forth we probably could have got it, but I have no regrets in simply paying out of pocket to have it immediately, especially at this discount rate.
It made an amazing difference for Karen, and she was able to back off the oxycodone immediately. The patch is 12 hours on, and then 12 hours off. Karen was feeling so well on Tuesday that we forgot to put the lidocaine patches back on after being off for 12 hours, and did she start to hurt again! I'm surprised they haven't used this with her at the hospital before. It probably wouldn't have done anything for the huge HIPEC surgery she had had, but it probably would have helped with the previous surgery, when the mesh was put in. At least we know to ask for it in the future.
We had the one week follow up today. With such large caliber sutures, the body is much more likely to "reject" them, and "spit" them out. This is also more likely to occur in an area that's had a lot of trauma. So the idea was to take them out after just one week, and switch to dermabond. Our concern has always been that removing them so soon would allow the wound to open up again. On our visit, the surgeon said the tissue around the stitches looked quite healthy, and if we're up for leaving them in longer we can check on them again Tuesday. He removed the JP drain, which was the most irritating thing for Karen at this point. It's connected through a hole in the skin a couple inches to the left of the wound, and is held in place by stitches of it's own. So she's happy that's out now. Everything is looking good so far.
Friday, April 8, 2016
Friday, April 1, 2016
We're home!
They waited to discharge Karen until they could get her pain to a reasonable level. They gave us a typed up list of instructions and then sent us on our way.
Operation Complete
I just spoke to the surgeon and he said everything went well. They took the mesh out and cleaned everything out. He said they did have to remove some skin so the wound will appear to be lower, and there will be more tension in the area. This means it's very important that she not reach up (or down) for anything. We're to minimize stretching. He also said they used heavy sutures this time, and they shouldn't stay in for more than a week. So we'll have to come back next Friday to have the stitches removed and replaced with our friend dermabond. He says as long as there are no unforeseen complications she should be going home today, and gave me directions for caring for the wound until then. Things like no showering until Sunday, and to keep the stitches covered with bacitracin, as they are a possible source of infection.
Into Surgery
They've taken her back for surgery. We spoke to the surgeon beforehand and he said with the surgery being so early, he'd like to see her go home by the end of the day if everything is going well. This is a surprise to us as we were initially told 2 to 3 days. The surgery itself should only be about an hour, but he said to add half an hour for trivial things like transportation.
Thursday, March 31, 2016
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.
Tuesday, March 29, 2016
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.
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.
Tuesday, March 22, 2016
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.
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.
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