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.

Almost There

In the past when we asked about the wound being open we were told it would be allowed to heal via secondary intention. This means it's allowed to heal closed on it's own. This typically allows the wound to drain without trapping any infection inside, but tends to cause more scarring. They had begun to show us how to clean and bandage the wound for this kind of closure. The surgeon came around to check on Karen and we asked about something we were seeing through the wound. It had a strange vertical texture and no one else we had asked was able to tell us what it was with any certainty. It turns out, what we were seeing was the mesh they had placed. When the surgeon saw it he made a face where he pushes his lips up over the top row of teeth. The only time I have seen this expression before was in October 2014, right before he told me the cancer was something Karen wouldn't be able to beat. So I think it was a bad thing, but I don't know how bad. He said it should normally be covered with tissue, and he might put a few stitches in before we leave. He also said Karen's ready to move on to solid food again, and advanced her diet.

The palliative team lowered the dosage of Karen's fentanyl patch because she was doing so well with her pain level. They told us it's one of the least likely medications of it's class to cause constipation, but with her pain level being so low it's worth trying a lower dose. However, later in the day the surgeon surprised us by coming back with another doctor. Together they stitched the wound closed - which was more than a few stitches - and put a catheter in through the old JP drain site. They say the catheter will function like a JP drain, but it has a tertiary valve and they also intend to use it to flush antibiotics through the wound three times a day. As such, they also put glue over the stitches to make sure the wound was air tight. She will also be on IV antibiotics until it heals - which, luckily, we can do at home thanks to her power port. They numbed most of the area with lidocaine, but some spots just didn't seem to take to the local anesthesia, and parts of it the suturing were very painful for Karen. She said she felt like screaming. Her pain level has ranged from 4 to 6 out of 10 since then. It's particularly painful twisting to get out of bed. We've tried some additional oral meds, but if things haven't settled down by morning I'm sure they'll return the patch to its previous strength.

My biggest concern is the sudden change of plans with the wound and the urgency with which it happened. Before the surgery we were told the biggest risk is that of the mesh getting infected. And today we heard one doctor say that they hope to "salvage the mesh." The pharmacy had a hard time getting the order worked out for the antibiotic flush, and none of the nurses have seen this sort of thing before. Even the connector for the catheter had to be pieced together with supplies taken from the operating room, and part of that starting leaking a few hours ago. A nurse replaced the leaking part with some kind of lock connector we use with the power port. The whole thing feels very much thrown together. Still, they insist none of this will delay our release, so they must be at least somewhat confident that this is the right thing to do, even if it is somewhat uncommon.

With all the fluids yesterday Karen had been getting up to pee a lot during the night. I think poor sleep in a hospital is just par for the course. We had a couple good nights in there, but it's probably easier to just say when she is able to get a good night's rest, rather than when she isn't. We're curious about how much weight she's lost with all of this not‑eating she's been doing, but haven't been weighed in a while. All of her vitals have been fine though. Her heart rate is slightly elevated compared to what would be considered normal, but it's around what it was when we came in. I think this has been a thing since her earlier surgeries. I don't know if it's cancer related or what. Oh, and she's finally completely disconnected from all IVs, montors, etc. Her port is still accessed, but she isn't even attached to an IV pole. When she needs something via IV they just give it to through her port and then disconnect when done. We expect to go home tomorrow, Tuesday, or the day after at the latest.

Here We Go Again

Right after posting yesterday they decided Karen had become dehydrated. Her heart rate was up and they checked her inputs and outputs and noticed she had 2.5L loss for the day, and similar amounts the day before. So around midnight they gave her two liters of fluid via IV. Needless to say, she was up a bunch during the night to pee. So she started today out a bit tired, but did manage to catch up on sleep a bit throughout the day. They continued to give her a liter of fluid here and there throughout the day as well. Following their conclusion that she had become dehydrated, they discontinued several of the harsher constipation remedies, including magnesium citrate and the suppositories. I believe she's just on colace, MiraLAX and senna now. I had been a little concerned over what seemed to be a slowing down of her bowels, as she was only defecating a few times throughout the day. With the news of her dehydration and vast negative sums for ins and outs, I'm thinking her body is just getting use to bowel movements again and she is simply able to hold it longer.

Today's x-ray showed that she had passed the stool that had been backed up for so long. There wasn't any eureka moment when the stool passed, it must have broke up in chunks and snuck out in the diarrhea, or simply dissolved in with the rest. I think we may have been expecting a bit more of a change, or maybe even some semblance of a regular poop where she could say, "Hey, things are starting to go back to normal." Of course the biggest sign of her recovery is that her distension has continued to come down; the remaining distension could just be swelling from the surgery still.

Her heart rate is still slightly elevated from its norm, but her temperature and blood pressure are fine. The fluid coming from the wound looks more transparent and appears less and less like puss. The opening is still half an inch tall, and maybe two inches wide. I don't expect this is something we'll be able to notice a difference with from day to day. They told us it certainly won't be closed up before we go home, and a wound care nurse showed me how to bandage the wound. They'll show me again a couple times before we leave.

As part of our cautious return to food, they did an extended clamping trial of 6 hours. Again, this is where they disconnect the NG tube from suction and see how much they can take out of it after a set amount of time. If nothing much comes back, then things are working their way through the intestines. Karen passed the trial and the NG tube has come out. Her throat is still very irritated from the NG tube. Her voice is dry and scratchy sounding when she talks, like someone losing their voice. On the bright side, her diet has been switched from NPO to clear liquids. As you would expect she's quite happy about heading towards solid food again, as she has been really starving the past several days. This will be our third attempt to move back to solid food. We still have the stool softener and it's friends on board this time around, and she's taking much fewer pain medications now. Third time's a charm.

Still Waiting

Karen seems to be getting more sleep at night, and today she seemed to be doing somewhat better emotionally, but progress otherwise has been slow. She's still taking a lot of different things to help with bowel movements, but things are slowing down and she is going less often, which feels counterintuitive to me. When she does go, it's mostly diarrhea, and not solid stool. They saw stool backed up in the intestines when they did the x-ray yesterday. So what they think is happening is fluid is now able to go around the stool, but the stool itself is staying in place. This explains both why her stomach is somewhat less distended - fluid can go around - and why all that going doesn't seem to be helping anymore - the stool isn't moving. Everyone assumes it's just a matter of time, but how much time, no one can say.

Her wound is still open, but the skin looks a little loose in the area, perhaps a bit stretched from earlier distention? It's finally starting to look better to me though. Our concern was that we can see what appears to the mesh showing through the opening, which is almost a half inch tall by two inches across. A wound nurse came in and we got to ask her about it. She told us we could very well be seeing the mesh, but open wounds like this will pull closed on their own as they heal. She said they regularly deal with openings much larger than this. The reason they don't like to suture or staple them closed is that it can trap the fluids or even things from the air under the skin, and cause an abscess. She said the human body is pretty amazing and knows what it's doing.

Her pain level has been as low as a 1 or 2 on a scale of 0 to 10, and she even refused some scheduled pain medication this morning because she didn't feel she needed it. They've finally taken her off the PCA, as she hadn't been using it at all. Since they don't allow you to shower with the PCA, she was able to have her first real shower since she came into the hospital. Sure they do bed baths, but it's just not the same. Another advantage to being off the PCA is she doesn't have to wear the pulseox on her finger 24/7 anymore. This added freedom made it possible for us to go out to the little desert garden area out front, and sit on a bench under a tree by the fountain. All in all, I think she had a good day.

2 To 3 Days Minimum!

I only foresaw two possible outcomes; either Karen was up all night, or she had to have the NG tube for a couple days. Turns out it was both. Before they could even confirm placement of the NG tube - this is done with an x-ray - she pooped for the first time in almost 4 days. They did a "pull" from the NG tube to see how full her stomach was, and found it more than they could measure. They put her on suction to decompress her stomach, but what they had given her already earlier in the day seemed to kick in. She was up every 15 to 30 minutes until the early hours of the morning. I fell asleep around 4 or 5am, so I'm not sure how much longer she went on.

Things did slow down at some point and she managed to sleep a couple hours before the doctors started coming in. Despite the lack of sleep, she was feeling lots better. Her pain level had come down, and continued to drop throughout the day. It's sitting around a 2 or 3 out of 10 right now, and that's almost entirely because of the NG tube. Her stomach is much softer and a little less distended. The wound is still weeping a lot, and appears to be at least slightly held open by the distension. However, when the doctors press on her stomach they comment on how much softer it feels. They say she still has a lot to go though, and want her intestines as empty as possible before starting back on food again. The phrase they used was "as clean as someone going in for a colonoscopy."

So they have been giving her more of the same all day long, including the bowel prep magnesium citrate. But she seems to have slowed way down, and is only making small amounts of progress. They clamp the NG tube for 45 minutes to an hour after they give her pills - so she can absorb them - and for 2 hours after a bowel prep, but when they turn it back on, most of it comes back out. It's strange things seem to be slowing down again even though she's on the same stool softeners and such a before. Actually, it's probably a stronger regiment than the day before due to the bowl preps they're putting in the NG tube twice a day now. She's even getting less painkiller than before. Yesterday there was somewhere between 20 to 30 presses on her PCA pump, but today with her pain level falling so much, she's only pressed it once. Just once. So she's getting a whole lot less anesthesia than in the past. She's still getting her acetaphetamine (Tylenol) as scheduled, but that's not the kind of thing to cause constipation.

She started out pretty happy things were moving again, and relieved that her pain level had dropped so much, but her spirits were absolutely crushed when doctors said she'd have to keep the NG tube for a day or two, and that it would be a minimum of two to three days until things get going again and she can head home. She hates the NG tube; it causes headaches and earaches, and makes it painful to talk or even swallow. And she says it's not the kind of pain the pain meds in the PCA pump help with. She's hungry, but can't eat anything. And she's thirsty, but can only suck on ice chips. She's tired of going through this and is worried she might not ever get out of here. This is the second time this stay they had to put the NG tube in, suction everything out, and start over. This isn't even the first stay where they had to do this. Back in 2013, on her first stay, this same thing happened. So she's worried it could just happen again and again. The doctors had indirectly addressed this, saying this time around she's going to be on multiple stool softeners every step of the way, but she's still extremely upset over going backwards again, and has been feeling really down most of the day.

Sigh, 2 To 3 Days?

Karen's stomach was so distended this morning that the doctors said it looked as big now as it did a week ago. It's actually holding the wound slightly open, and preventing it from healing shut. The wound is still draining a lot too, and looks worse than before, at least to me. The doctors all want to check it, but still no one seems to be too worried about it. The constipation is what's on everyone's mind.

It's been over 72 hours now since she's passed any stool. They've tried just about everything to get Karen going again. Besides doubling down on everything from yesterday, they've given her milk of magnesia, seena, several different types of enemas, and even tried a manual removal. And she has been doing a lot of walking, not as much as yesterday, but still a lot. Her pain level keeps going up and up, and was putting it at an 8 out of 10 today. The palliative team told her they'd be willing to raise the dosage of her pain medication, but told her doing so might slow her intestines down even more. So she declined. They were going to discontinue the PCA pump last night or this morning, but decided to leave it there to help deal with the pain. They want her off the pump for at least a day before sending her home.

She hasn't eaten anything in the past 48 hours out of her own volition. Well, except for a little warm broth last night, thinking maybe it would help. Despite not eating, she started to get very nauseous today. When attempting to drink 20oz of magnesium citrate in under an hour - which is typically how one would prepare for a colonoscopy - she started vomiting. And retching is what caused the tearing of her stomach muscles the last time. At this point they wanted to put an NG tube in. Karen had told me she was going to refuse another NG tube, but I guess when you're feeling as miserable as her you're willing to try anything for relief. So she agreed to having another NG tube. Luckily this one went in fairly easily, and they are currently sucking out the contents of her stomach, which should help alleviate the nausea. If they don't find too much in there they will try sending another bowl prep in through the NG tube. With her rising pain levels, she didn't get as much sleep last night as she had gotten the past couple before, but she might not be getting much at all tonight if they try another bowl prep. If there's too much in there and they feel they need to decompress her stomach all night and into tomorrow, she'll get to sleep, but it could add a day or two to our stay.