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.
Monday, February 29, 2016
Sunday, February 28, 2016
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.
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.
Saturday, February 27, 2016
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.
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.
Friday, February 26, 2016
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.
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.
Thursday, February 25, 2016
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.
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.
Wednesday, February 24, 2016
1 To 2 Days
Karen is sleeping a little better at night without those pesky bathroom breaks. Unfortunately, this means she's still had no bowel movements, and it's been over 48 hours now. Her abdomen is really getting distended. They have her drinking as much prune juice as she wants, and they have Colace, MiraLAX, and suppositories at her disposal. She didn't have an appetite to eat breakfast or lunch, and just wanted a little broth for dinner. She seems quite worried they're going to have to put the NG tube back in, but I think even the doctors are hesitant to do that now. Everyone seems to think, since things were running well before, that this is just constipation caused by all the pain medication she's taking. This was never a problem with the ostomy, so this is new to us.
The palliative team have taken Karen off the continuous drip and have moved her to a patch. They said we could do either patches or pills, but we went with the patch. It only needs to be changed once every 3 days, so it's much easier to to keep up on and you don't have to worry about missing a dose or timing it wrong and waking up in pain. We still have the PCA pump, but it only administers the painkiller when you press the button now. So far this seems to be working well. They are watching the counts, and if she doesn't hit the button too often they will know they have the right dosage for the patch and she will be good to go home tomorrow. She'll also have a little "breakthrough" medication at her disposal to take the place of the PCA pump. If she needs to use the PCA pump often they might want to keep her an extra day to attempt to adjust the dosage. That said, her pain level is up due to all the distension in her stomach, so I'm not sure how it's going to affect these plans.
It seems the wound may finally be starting to seep less. For a while there it seemed to be draining more and more. Either way the antibiotics seem to be keeping things in check. And it hasn't gotten all red or inflamed yet, which is what everyone seems to be watching for now. The surgeon says Karen's ready to go home, but doesn't want to release her until she's pooping. So we're almost there; just one or two more days.
The palliative team have taken Karen off the continuous drip and have moved her to a patch. They said we could do either patches or pills, but we went with the patch. It only needs to be changed once every 3 days, so it's much easier to to keep up on and you don't have to worry about missing a dose or timing it wrong and waking up in pain. We still have the PCA pump, but it only administers the painkiller when you press the button now. So far this seems to be working well. They are watching the counts, and if she doesn't hit the button too often they will know they have the right dosage for the patch and she will be good to go home tomorrow. She'll also have a little "breakthrough" medication at her disposal to take the place of the PCA pump. If she needs to use the PCA pump often they might want to keep her an extra day to attempt to adjust the dosage. That said, her pain level is up due to all the distension in her stomach, so I'm not sure how it's going to affect these plans.
It seems the wound may finally be starting to seep less. For a while there it seemed to be draining more and more. Either way the antibiotics seem to be keeping things in check. And it hasn't gotten all red or inflamed yet, which is what everyone seems to be watching for now. The surgeon says Karen's ready to go home, but doesn't want to release her until she's pooping. So we're almost there; just one or two more days.
Tuesday, February 23, 2016
2 To 3 Days
Karen actually managed to get a decent night's sleep last night. We're getting fewer random visits from doctors, and things seem to be calming down a little as far as the bathroom goes. We were pretty happy things were slowing down, but she actually hasn't had a bowel movement since yesterday before bed. There doesn't seem to be any less swelling in her abdomen today; if anything, this has caused more pressure. No one seems too concerned at this point, but it's been over 24 hours.
The palliative team beat the surgical team in this morning. But neither came until after 8am. We didn't even get the super early doctors around 4 or 5am. We are thinking Karen must be less "interesting" now, and figure it was a good sign. They lowered the continuous dosage on her painkiller some more, but still haven't transitioned her away from the PCA pump. Her pain medication is the last thing she gets via IV, everything else has been transitioned over to pill form.
Next, the surgeon came in with a helper. He pressed and squeezed the drainage out of the surgical site. There was so much drainage. He said that the JP drain must had gotten blocked, perhaps by a clot, and came out too early. The whole process looked quite painful, but Karen seemed fine and wasn't wincing or anything. She says she doesn't feel much on the surface near the surgical incision, but later in the day the whole area was certainly more painful. The doctor said it was now purulent, which I've read is just a fancy way to say it's now draining pus, but it does mean there's some kind of infection going on. She's still taking the antibiotics for the UTI, so maybe they are hoping that will help with the infection.
When she woke this morning her pain level was at a 2 or 3 out of 10; the best it's been her whole stay. But between the increased pressure, lower pain meds, and the manipulation of the wound, her pain level had gone up quite a bit by mid day. It was back around a 7. To be fair we've also done more walking today than ever before as well, so that's also bound to raise her pain level a bit. Laying in bed now before going to sleep it seems to have dropped a little, perhaps to a 4 or 5, but this is mostly because she isn't moving around.
Everyone seems to think we'll be out of here in 2 or 3 days. This is the same time frame they gave us directly following the surgery. In fact, for the first half of our stay everyone kept estimating 2 or 3 days. This happened for about a week, and then they stopped giving us estimates. At one point we were told, "Don't worry we won't send you home until you're better." We weren't asking, but they must be so use to people asking that they felt obligated to provide such information. We can't help but find a little humor in the new estimates of "2 to 3 days."
The palliative team beat the surgical team in this morning. But neither came until after 8am. We didn't even get the super early doctors around 4 or 5am. We are thinking Karen must be less "interesting" now, and figure it was a good sign. They lowered the continuous dosage on her painkiller some more, but still haven't transitioned her away from the PCA pump. Her pain medication is the last thing she gets via IV, everything else has been transitioned over to pill form.
Next, the surgeon came in with a helper. He pressed and squeezed the drainage out of the surgical site. There was so much drainage. He said that the JP drain must had gotten blocked, perhaps by a clot, and came out too early. The whole process looked quite painful, but Karen seemed fine and wasn't wincing or anything. She says she doesn't feel much on the surface near the surgical incision, but later in the day the whole area was certainly more painful. The doctor said it was now purulent, which I've read is just a fancy way to say it's now draining pus, but it does mean there's some kind of infection going on. She's still taking the antibiotics for the UTI, so maybe they are hoping that will help with the infection.
When she woke this morning her pain level was at a 2 or 3 out of 10; the best it's been her whole stay. But between the increased pressure, lower pain meds, and the manipulation of the wound, her pain level had gone up quite a bit by mid day. It was back around a 7. To be fair we've also done more walking today than ever before as well, so that's also bound to raise her pain level a bit. Laying in bed now before going to sleep it seems to have dropped a little, perhaps to a 4 or 5, but this is mostly because she isn't moving around.
Everyone seems to think we'll be out of here in 2 or 3 days. This is the same time frame they gave us directly following the surgery. In fact, for the first half of our stay everyone kept estimating 2 or 3 days. This happened for about a week, and then they stopped giving us estimates. At one point we were told, "Don't worry we won't send you home until you're better." We weren't asking, but they must be so use to people asking that they felt obligated to provide such information. We can't help but find a little humor in the new estimates of "2 to 3 days."
Monday, February 22, 2016
Another Day
Directly after my last post, Karen had chills and a very low grade fever. But it was time for her acetaminophen, which broke the fever. I don't know what that was about - if it was related the UTI or something else - but she's been fine since. Of course she had to get up multiple times throughout the night to go to the bathroom, but that was expected. Lunch was her first regular fiber meal, but it made her a bit nauseous. There was also some pain, which the doctors say may have been gas pain. And then dinner went down fine without a hitch.
The surgical incision still has drainage. The surgeon looked at and I overheard him saying the drainage was seropurulent. He told us there wasn't anything to worry about yet. Later in the evening someone else from the surgical team looked at it and said it may have to be drained in the morning. She's also had her continuous painkiller dosage reduced, and they are moving her onto pills for most medications.
The surgical incision still has drainage. The surgeon looked at and I overheard him saying the drainage was seropurulent. He told us there wasn't anything to worry about yet. Later in the evening someone else from the surgical team looked at it and said it may have to be drained in the morning. She's also had her continuous painkiller dosage reduced, and they are moving her onto pills for most medications.
Sunday, February 21, 2016
Solids
Karen is back on solid foods. She started slow as planned, and is still eating a low fiber diet. With her pain level slowly climbing the palliative team came to the rescue again. They increased the dosage of her contiguous hydromorphone by 20%. This brought the pain level down enough that she's actually been hittin the PCA pump less. It actually seems significantly less; so much so that I wonder if her pain level hadn't started to turn around on it's own as well. Her swelling seems to be going down, but ever so slowly. Her surgical site is still weeping, but it's mostly clear fluid and the area doesn't look pink or red. However, the longer this goes on - and it has been going on longer than anyone would like - the better the chance she has of getting an infection in the area. In that case it may have to be lanced and stuffed with gauze, which is as painful as it sounds.
A couple days ago Karen started getting pretty confused at night. Everyone we told would say, "Well, she's/you're on some pretty strong drugs." And then shrug it off. But she's been on these exact drugs before without these side effects, so I wondered if it couldn't be something else causing the confusion and asked for a UTI test. When I mentioned it to a nurse or doctor, they ensured us her urine was "clear" coming from the catheter, and that they'd be able to see if there was a problem. They also said her white blood cell count was normal, and it would be elevated if there was an infection. My response was that if Karen's white blood cell count was in the "normal" range, that was elevated for her. Her temperature is also pretty normal, but she's on IV acetaminophen (Tylenol) and that would mask any fevers. And her pain meds would probably mask any pain. Karen had also been complaining about feeling the need to pee, which can happen with a catheter, but I didn't like that either. So I told the doctors, just with everything going on, I still felt like it could be a UTI and would feel better if they did a test. It takes two days to get the results, so sometime last night they got the results back and started her on some antibiotics first thing this morning. The test had come back positive.
I'm disappointed they didn't start her on an antibiotic a few days ago when we requested the test. But the bright side is, the test suggested the use of levofloxacin, which is also commonly used to treat skin infections. So this should help lower her odds of getting an infection at the surgical site.
A couple days ago Karen started getting pretty confused at night. Everyone we told would say, "Well, she's/you're on some pretty strong drugs." And then shrug it off. But she's been on these exact drugs before without these side effects, so I wondered if it couldn't be something else causing the confusion and asked for a UTI test. When I mentioned it to a nurse or doctor, they ensured us her urine was "clear" coming from the catheter, and that they'd be able to see if there was a problem. They also said her white blood cell count was normal, and it would be elevated if there was an infection. My response was that if Karen's white blood cell count was in the "normal" range, that was elevated for her. Her temperature is also pretty normal, but she's on IV acetaminophen (Tylenol) and that would mask any fevers. And her pain meds would probably mask any pain. Karen had also been complaining about feeling the need to pee, which can happen with a catheter, but I didn't like that either. So I told the doctors, just with everything going on, I still felt like it could be a UTI and would feel better if they did a test. It takes two days to get the results, so sometime last night they got the results back and started her on some antibiotics first thing this morning. The test had come back positive.
I'm disappointed they didn't start her on an antibiotic a few days ago when we requested the test. But the bright side is, the test suggested the use of levofloxacin, which is also commonly used to treat skin infections. So this should help lower her odds of getting an infection at the surgical site.
Saturday, February 20, 2016
All Tubes Out
Karen requested the NG tube be taken out around noon. She said it was even painful coming out, which is strange because she usually only describes it as feeling weird when being removed; they've never hurt coming out before. One of the nurses had suggested there might be some scar tissue from having had one for so long before. She's still on a liquid diet, but should be starting on solid food sometime tomorrow.
They've had her on Lasix, a dietetic, since surgery. But it didn't make much of a difference until the catheter came out, which also happened yesterday, but got lost in all the excitement. So not only is she going to the bathroom frequently as she adjusts to using her lower intestines again, but she's peeing frequently for 5 or 6 hours after her Lasix. She refuses the 9pm dose, but all and all she was still up a lot last night, and we're expecting the same tonight.
Yesterday and the day before, the doctors had been saying her bloating was going down, but she told me she didn't feel a difference herself. Today is the first day where she can actually feel the bloated going away, and seemed a little excited about it. Her pain level is slowly creeping back up, and this concerns me a little since the same thing happened before they had to go back into surgery to replace her mesh. It seems too soon, but I suppose she also might be developing a tolerance to the hydromorphone the PCA pump administers.
They've had her on Lasix, a dietetic, since surgery. But it didn't make much of a difference until the catheter came out, which also happened yesterday, but got lost in all the excitement. So not only is she going to the bathroom frequently as she adjusts to using her lower intestines again, but she's peeing frequently for 5 or 6 hours after her Lasix. She refuses the 9pm dose, but all and all she was still up a lot last night, and we're expecting the same tonight.
Yesterday and the day before, the doctors had been saying her bloating was going down, but she told me she didn't feel a difference herself. Today is the first day where she can actually feel the bloated going away, and seemed a little excited about it. Her pain level is slowly creeping back up, and this concerns me a little since the same thing happened before they had to go back into surgery to replace her mesh. It seems too soon, but I suppose she also might be developing a tolerance to the hydromorphone the PCA pump administers.
Friday, February 19, 2016
Poop
Karen's intestines are up and going at full speed. Which of course means she didn't get much sleep last night; she must have gotten up 6 or 7 times to go to the bathroom. (And suggested the title for this post.) So she's a bit more drowsy than she was yesterday. Yesterday they were able to get her pain level down to a 5 out 10, and was hovering around a 6 the day before. Today, it's occasionally come down to a 4. She says she can deal with a 3 out of 10 well enough to read for pleasure, or hold a casual conversation, but her goal is a 2 out of 10.
The surgical team decided she could have her NG tube taken out, but she had such a traumatic time with it going in that she asked if they could do a test run before removing it. So they started with a "clamp test." They turn off the suction for 4 hours and then see how much they can suction up through the tube. Nothing came back up the tube, so she passed the clamp test. This was around noon, and soon she was allowed to have clear fluids. She started slowly with water, and had some broth with a cup of coffee for lunch. She's getting a clear liquid dinner now. After she's been on clear fluids long enough without getting sick, they will advance her to solid foods and at that point they will have to remove the NG tube.
The surgical team decided she could have her NG tube taken out, but she had such a traumatic time with it going in that she asked if they could do a test run before removing it. So they started with a "clamp test." They turn off the suction for 4 hours and then see how much they can suction up through the tube. Nothing came back up the tube, so she passed the clamp test. This was around noon, and soon she was allowed to have clear fluids. She started slowly with water, and had some broth with a cup of coffee for lunch. She's getting a clear liquid dinner now. After she's been on clear fluids long enough without getting sick, they will advance her to solid foods and at that point they will have to remove the NG tube.
Thursday, February 18, 2016
Moving Forward Again
Karen got a good solid 4 hour block of sleep last night, which is hard to do in a hospital. But she woke up pretty confused. She eventually went back to sleep for a couple more hours and woke up a little confused again. But the third time's a charm, and woke up pretty alert come this morning.
I don't think I've described it here before, but her stomach had really gotten swollen. One of the friendlier doctors had joked that she looked pregnant, and honestly, that's what it looked like. That said, the swelling in her stomach has finally started to go down. She's still not allowed food or drink, but her rectal tube has come out and her vitals have improved. Her heart rate is back in the low 100s and her blood pressure is a healthy 117/91.
It's been a little frustrating lately. It seemed like everything that could go wrong, did. We finally feel like we're heading in the right direction again.
I don't think I've described it here before, but her stomach had really gotten swollen. One of the friendlier doctors had joked that she looked pregnant, and honestly, that's what it looked like. That said, the swelling in her stomach has finally started to go down. She's still not allowed food or drink, but her rectal tube has come out and her vitals have improved. Her heart rate is back in the low 100s and her blood pressure is a healthy 117/91.
It's been a little frustrating lately. It seemed like everything that could go wrong, did. We finally feel like we're heading in the right direction again.
Wednesday, February 17, 2016
Long Day
It was a long day. They had to adjust Karen's NG tube twice, and her nose was already sensitive and in a lot of pain because the nurse who put it in first was way too rough about it. Her heart rate has been climbing the whole day. It's been in the 120s all night, but has jumped into the 130s on occasion. Her blood pressure has been rising throughout the day as well. It's currently at 140/91, when her normal is in the low 100s. Her blood counts are pretty steady for yet another day, so I think we're past the previous problem. They did finally move us out of the ICU and into a regular room this afternoon.
They've been doing a good of job of keeping her pain level lower, but I think the amount she's taking is knocking her out. She slept, on and off, for most of the day. She probably needed some sleep, but I'm not sure how helpful it is in small quantities. Everyone wants to see you during the day when you're as interesting as Karen is. And because she's been so tired and moving so little, she's getting some atelectasis; essentially, her lungs are closing up. It's not as bad as it sounds, but it's one more thing.
We were under the impression that this was a mechanical blockage like before, but when the surgeon came around tonight he said there is an obstruction, but it's due to an ileus. This is when your intestines go to sleep, and is usually caused by surgery but can be triggered by drugs. But the whole diagnosis is strange to because she's having bowl movements, one this morning and one this evening. And that's usually a sign you're not obstructed. They believe there's a build up of gas causing the obstruction, and placed a rectal tube several hours ago to try and resolve the problem. They think the NG tube may be too small, but it doesn't seem they are going to do anything about it tonight. Still no food or drink for her though.
They've been doing a good of job of keeping her pain level lower, but I think the amount she's taking is knocking her out. She slept, on and off, for most of the day. She probably needed some sleep, but I'm not sure how helpful it is in small quantities. Everyone wants to see you during the day when you're as interesting as Karen is. And because she's been so tired and moving so little, she's getting some atelectasis; essentially, her lungs are closing up. It's not as bad as it sounds, but it's one more thing.
We were under the impression that this was a mechanical blockage like before, but when the surgeon came around tonight he said there is an obstruction, but it's due to an ileus. This is when your intestines go to sleep, and is usually caused by surgery but can be triggered by drugs. But the whole diagnosis is strange to because she's having bowl movements, one this morning and one this evening. And that's usually a sign you're not obstructed. They believe there's a build up of gas causing the obstruction, and placed a rectal tube several hours ago to try and resolve the problem. They think the NG tube may be too small, but it doesn't seem they are going to do anything about it tonight. Still no food or drink for her though.
Long Night
Karen got a sharp pain in her abdomen in the middle of the night. Her pain level quickly jumped to a 9 out of 10, and it took most of the night and into the morning to get her pain level back down. Needless to say, she didn't sleep very much. Her heart rate also jumped back into the 100s; so that's got to be pain related. They brought in a portable X-Ray machine and took an image of her abdomen. They tell us we're dealing with an obstruction of the intestines.
They inserted an NG tube to drain the contents of her stomach. She really hates those, and this one was particularly painful as it went in. It hasn't actually suctioned anything out yet, so maybe that means things are still moving forward at this point? It's also worth noting that she hasn't been nauseous through any of this, which is almost always the case with a blockage. It may have been caught early due to her abdomen already being sensitive from all it's been through lately. However, this does mean she's been taken off solid food again, and with the NG tube in, she won't be able to drink anything either.
Two steps forward, one step back. But at least we're moving forward.
They inserted an NG tube to drain the contents of her stomach. She really hates those, and this one was particularly painful as it went in. It hasn't actually suctioned anything out yet, so maybe that means things are still moving forward at this point? It's also worth noting that she hasn't been nauseous through any of this, which is almost always the case with a blockage. It may have been caught early due to her abdomen already being sensitive from all it's been through lately. However, this does mean she's been taken off solid food again, and with the NG tube in, she won't be able to drink anything either.
Two steps forward, one step back. But at least we're moving forward.
Tuesday, February 16, 2016
Slight Improvement
Karen's heart rate has come down since yesterday, before the surgery. It's in the mid 90s now. Her temperature is normal again as well. The surgical team had put in a JP drain to help her abdomin drain after the surgery. A lot of blood has been coming out, but it seems a lot of air is filling the JP drain as well.
The diuretics they've been giving her seem to be working very well - she has had a lot of urine output. It seems the swelling in her body is going down, but maybe not in her abdomen. It's hard to say but swelling may still be increasing there. They did end up changing her pain medication to be more consistent. Half the dosage is administered automatically and the other half when she activates the PCA pump. This seems to be enough to let her sleep without needing to wake up to activate the PCA pump. They're also giving her the antinausea medication as she is able to take it instead of as needed, which seems to be staying ahead of any nausea. She's back on regular food again and eating quite well. Her stomach muscles maybe still be a mess, but her intestines must be working as she has defecated several times today.
She was very happy with the adjustments to the pain medication, but it seems her pain level is still slowly climbing. I can't help but wonder if it's related to the swelling in her abdomen. I'm not sure what will come of it, but she's had a good day so far, all things considered.
The diuretics they've been giving her seem to be working very well - she has had a lot of urine output. It seems the swelling in her body is going down, but maybe not in her abdomen. It's hard to say but swelling may still be increasing there. They did end up changing her pain medication to be more consistent. Half the dosage is administered automatically and the other half when she activates the PCA pump. This seems to be enough to let her sleep without needing to wake up to activate the PCA pump. They're also giving her the antinausea medication as she is able to take it instead of as needed, which seems to be staying ahead of any nausea. She's back on regular food again and eating quite well. Her stomach muscles maybe still be a mess, but her intestines must be working as she has defecated several times today.
She was very happy with the adjustments to the pain medication, but it seems her pain level is still slowly climbing. I can't help but wonder if it's related to the swelling in her abdomen. I'm not sure what will come of it, but she's had a good day so far, all things considered.
Recovery
When they said it was a tough surgery for Karen they meant it. They wanted her in the ICU overnight to monitor her. Luckily the night was uneventful, and so far they haven't had to give her more blood. She's still quite groggy and falling in and out of consciousness when people are talking with her. She didn't sleep very well and says she's afraid to go asleep for too long because she doesn't want to wake up to a high level of pain because she wasn't activating the PCA pump.
The surgical team has put an order in to move her to a regular room, and they are allowing her to eat a regular diet again. They said they're concerned with how much swelling her she's having in her body as a whole, and are putting her on a diuretic to get some of that fluid out of her body. The palliative team has also been around and said they want to address the issue Karen's having with sleep and the use of the PCA pump. They said they might be able to get the hydromorphone on a drip, but if that isn't an option they'll come up with something else. We also saw a social worker today. Sometimes I feel social workers are more interested in being social, than in helping, but I didn't get that impression this time. I don't think there's anything she can help us with, but she kept steering the conversation towards our needs and didn't overstay her welcome as I've often felt social workers have done.
The surgical team has put an order in to move her to a regular room, and they are allowing her to eat a regular diet again. They said they're concerned with how much swelling her she's having in her body as a whole, and are putting her on a diuretic to get some of that fluid out of her body. The palliative team has also been around and said they want to address the issue Karen's having with sleep and the use of the PCA pump. They said they might be able to get the hydromorphone on a drip, but if that isn't an option they'll come up with something else. We also saw a social worker today. Sometimes I feel social workers are more interested in being social, than in helping, but I didn't get that impression this time. I don't think there's anything she can help us with, but she kept steering the conversation towards our needs and didn't overstay her welcome as I've often felt social workers have done.
Monday, February 15, 2016
Surgery Complete
I just talked to the surgeon. He said it was worse than he expected. He says Karen's mesh had torn free of the muscle and they had to redo the whole thing. He said add to that the fact that she has so few platelets to cause clotting, and it was a difficult surgery for her. She'll probably be groggy for the rest of the evening as she recovers from the surgery. They put a much larger mesh in this time, so there will be more give. So if she heaves or vomits now it will stand a much better chance of staying in place. The downside to a larger mesh is one side of her abdomen will have a bit of a bulge. The doctor says it's something she'll just have to get use to, and that it's still an improvement over an ostomy.
I remember Karen saying she felt something pop that first day after surgery when she was heaving. There wasn't any pain involved so the nurse wrote it off as the constricting band slipping or popping open, as it's held together with velcro. In hindsight I guess we should have insisted we talk to a doctor about it. There still would have been another surgery, but there wouldn't have been so much pain in between. As far as the surgery goes there's really nothing the surgeon could have done differently, they don't usually use a larger mesh for cosmetic reasons. If they had given her more platelets from the start and she had clotted right away, the mesh would have just healed out of place and she still would have required another surgery to fix it.
I remember Karen saying she felt something pop that first day after surgery when she was heaving. There wasn't any pain involved so the nurse wrote it off as the constricting band slipping or popping open, as it's held together with velcro. In hindsight I guess we should have insisted we talk to a doctor about it. There still would have been another surgery, but there wouldn't have been so much pain in between. As far as the surgery goes there's really nothing the surgeon could have done differently, they don't usually use a larger mesh for cosmetic reasons. If they had given her more platelets from the start and she had clotted right away, the mesh would have just healed out of place and she still would have required another surgery to fix it.
Into Surgery
They've just taken her into surgery but it took a long time to clean her up for surgery and as soon as she was ready they were ready for her in the operating room, so I didn't get a chance to go back to preop and talk to the nurses and doctors like I usually do. I don't know how long the operation is expected to take. I'll post again when she's done.
Pre-Op
They've taken her back to pre-op. So it's happening soon. They've only had time to give her 2 units of red blood cells and 1 unit of platelets, but they're comfortable with that. It's typically an hour until they take you from pre-op into surgery. I'll post again once they take her back for surgery.
Going Back In
Karen managed to get a good 5 hours of unbroken sleep last night, which is fairly good for a hospital stay, but as her condition becomes more "interesting" we have more and more people that want to talk to her. So she was barely able to sleep after that and is very tired. Her pain level is still slowly climbing, she's a 5 or 6 out of 10, even with the PCA pump. She's also more nauseous than before, which she thinks might be due to her pain level. No one's offered any other suggestions as to why that might be. Her blood counts are still dropping and her hematoma is still enlarging. This indicates she still has some internal bleeding.
The surgeon says even if the bleeding were to stop now, there's so much blood trapped in the tissue that it would become very hard and take a long time to recover. Having such a large hematoma also presents a chance of infection. He wants to reopen the surgical site, flush all the blood out, and see if they can pinpoint the leak and fix it. If nothing else they would have washed out everything that's built up so far, greatly reducing recovery time. She's being given 2 units of red blood cells to replace what she's lost. After that they will give 2 units of platelets, not only to try and stop the bleeding, but in preparation for surgery. She's still NPO - no food or water. It takes some time to receive all those transfusions and then we're expected to go into surgery sometime early afternoon. Although I wouldn't be surprised if it didn't happen until later in the day.
The palliative team was also here and they are going to up her PCA pump dosage more. There are a couple antiemetics we like that help with the naesua and don't have many side effects, but Karen's been needing something more and they have been giving her Compazine. It knocks her out for hours at a time and she has trouble answering questions or holding a conversation after it's been given, an effect neither Karen nor the doctors like. The palliative team wants to try something called Haldol. The hope is that it won't be as sedating as the compazine.
The surgeon says even if the bleeding were to stop now, there's so much blood trapped in the tissue that it would become very hard and take a long time to recover. Having such a large hematoma also presents a chance of infection. He wants to reopen the surgical site, flush all the blood out, and see if they can pinpoint the leak and fix it. If nothing else they would have washed out everything that's built up so far, greatly reducing recovery time. She's being given 2 units of red blood cells to replace what she's lost. After that they will give 2 units of platelets, not only to try and stop the bleeding, but in preparation for surgery. She's still NPO - no food or water. It takes some time to receive all those transfusions and then we're expected to go into surgery sometime early afternoon. Although I wouldn't be surprised if it didn't happen until later in the day.
The palliative team was also here and they are going to up her PCA pump dosage more. There are a couple antiemetics we like that help with the naesua and don't have many side effects, but Karen's been needing something more and they have been giving her Compazine. It knocks her out for hours at a time and she has trouble answering questions or holding a conversation after it's been given, an effect neither Karen nor the doctors like. The palliative team wants to try something called Haldol. The hope is that it won't be as sedating as the compazine.
Sunday, February 14, 2016
Follow Up
They got Karen back on the PCA pump around 5 or 6pm, and with a higher dosage than before. She's been able to bring her pain back to around a 4 or 5, and seems at least somewhat comfortable. Her heart rate has been somewhat elevated since the surgery, but it's in the mid 120s now. Her temperature was 99.8°F when they tested it last. And lastly, she's has an NPO order for after midnight - which means no food or water.
I guess when they said a doctor would be coming around later they just meant sometime later in the day. A pair of them came in about 10pm. They say what Karen has is a hematoma - a collection of blood within the tissue. They says it's actually pretty common and not something we should worry too much about. They also said her blood counts have gone up slightly since she received the platelets, so that could mean whatever internal bleeding she had has stopped. It could also mean she isn't getting enough liquids and her blood is simply thicker. So they want to make sure she's getting enough fluids. They will reevaluate in the morning, and one thing they may decide at that time is to give her more blood product to help things clot. They also said the NPO after midnight is in case they decide they have to go in surgically to resolve the situation. We asked if they could just drain it with a needle and they said that's one thing they will be discussing with our surgeon, but they want to watch the situation till morning, and want her ready in case surgery turns out to be the best option. They may also do an ultrasound to look at the hematoma before making a decision, but that would also be in the morning. Often times the body will simply reabsorb the blood without intervention. We asked about the increased temperature and were told it's common with hematoma and not a concern yet. The heart rate is probably also related to the hematoma, but other things such as pain or dehydration can cause an increased heart rate.
They're giving her 500ml of Albumin, which is the primary protein found in the blood. If she is dehydrated this should also help pull some fluid back into her blood. Now we wait until morning.
I guess when they said a doctor would be coming around later they just meant sometime later in the day. A pair of them came in about 10pm. They say what Karen has is a hematoma - a collection of blood within the tissue. They says it's actually pretty common and not something we should worry too much about. They also said her blood counts have gone up slightly since she received the platelets, so that could mean whatever internal bleeding she had has stopped. It could also mean she isn't getting enough liquids and her blood is simply thicker. So they want to make sure she's getting enough fluids. They will reevaluate in the morning, and one thing they may decide at that time is to give her more blood product to help things clot. They also said the NPO after midnight is in case they decide they have to go in surgically to resolve the situation. We asked if they could just drain it with a needle and they said that's one thing they will be discussing with our surgeon, but they want to watch the situation till morning, and want her ready in case surgery turns out to be the best option. They may also do an ultrasound to look at the hematoma before making a decision, but that would also be in the morning. Often times the body will simply reabsorb the blood without intervention. We asked about the increased temperature and were told it's common with hematoma and not a concern yet. The heart rate is probably also related to the hematoma, but other things such as pain or dehydration can cause an increased heart rate.
They're giving her 500ml of Albumin, which is the primary protein found in the blood. If she is dehydrated this should also help pull some fluid back into her blood. Now we wait until morning.
Something's Wrong
Karen slept alright last night, but not as well as the night before. She woke up this morning with a small fever of 99.2°F. Looking over her labs I can see her blood counts have been dropping since yesterday. The doctors think there must be some internal bleeding and one called it hemorrhaging. They have put a stop to her heparin shots. It's a blood thinner that's given to you when they don't think you'll be moving around much so you don't get blood clots. They're painful, burning, "horrible" shots and her primary motivation in getting up and walking around has been being able to refuse them.
She's been walking around a decent amount since they took her off bed rest, but now I wonder if she came off it too soon. Her abdomen has continued to swell throughout the day and her pain level has continued to rise as well. This morning she thought she could do without the PCA pump, just taking oxycodone orally. This, however, turned out to be some bad timing. The unexpected swelling/hemorrhaging has increased her pain level at the same time she agreed to start backing off the pain meds. She can still get something through the IV once an hour, but her pain level jumps up to about 8 out of 10 between doses now.
They took her off food and fluids about an hour ago and gave her an infusion of platelets. They wouldn't do this unless they were also thinking surgery might be required. They said depending on how her blood work turns out after the infusion, she might be able allowed to eat and drink again. And... that was pretty fast, they've lifted the food and water restrictions. That seems almost too fast for them to know anything. The nurse tells us someone should be coming around to talk to us. I'll update again when we know more.
She's been walking around a decent amount since they took her off bed rest, but now I wonder if she came off it too soon. Her abdomen has continued to swell throughout the day and her pain level has continued to rise as well. This morning she thought she could do without the PCA pump, just taking oxycodone orally. This, however, turned out to be some bad timing. The unexpected swelling/hemorrhaging has increased her pain level at the same time she agreed to start backing off the pain meds. She can still get something through the IV once an hour, but her pain level jumps up to about 8 out of 10 between doses now.
They took her off food and fluids about an hour ago and gave her an infusion of platelets. They wouldn't do this unless they were also thinking surgery might be required. They said depending on how her blood work turns out after the infusion, she might be able allowed to eat and drink again. And... that was pretty fast, they've lifted the food and water restrictions. That seems almost too fast for them to know anything. The nurse tells us someone should be coming around to talk to us. I'll update again when we know more.
Saturday, February 13, 2016
Slowly But Surely
Yesterday's lunch stayed down fine, and her nausea is now under control. She started taking olanzapine when on chemotherapy to help control the nausea, and it seems to be working great in this situation as well. They've OKed a solid food diet for Karen today, but she had already eaten breakfast by this time. So far the solid food seems to be staying down and not causing any problems.
Everything else has been progressing nicely as well. She was able to get a decent amount of sleep at night again so I'm sure that helps. Her pain level is still at a 3 out of 10 but she's using a lot less hydromorphone. She has been taking some of her medications orally, which they like to do before they send you home. She still has the PCA pump because they expect the pain level to increase as she begins to move around. Her "bed rest" order has been removed and they are now encouraging her to walk around bit. Everything related to her digestion seems to be working again, but this also means they expect her to be using the bathroom "8 to 10 times a day." So she'll get some moving around from that.
Those first 24 hours of nausea and vomiting weren't conducive to healing and was part of the reason she was confined to bed for that time. We're still happy with the progression, but it looks like it might end up being closer to 5 days than the 2 or 3 the doctors had hoped would be possible. Everyone always says how healthy she looks, even when she's often not feeling well at the time. While at first we were surprised, it's happened so often that we now find it funny when we meet a doctor for the first time and they say, "you look so much better than you sound on paper." And it's not just doctors, it's the nurses, friends, and family. So it's easy to overestimate her recovery speed. We aren't disappointed with the recovery speed.
Everything else has been progressing nicely as well. She was able to get a decent amount of sleep at night again so I'm sure that helps. Her pain level is still at a 3 out of 10 but she's using a lot less hydromorphone. She has been taking some of her medications orally, which they like to do before they send you home. She still has the PCA pump because they expect the pain level to increase as she begins to move around. Her "bed rest" order has been removed and they are now encouraging her to walk around bit. Everything related to her digestion seems to be working again, but this also means they expect her to be using the bathroom "8 to 10 times a day." So she'll get some moving around from that.
Those first 24 hours of nausea and vomiting weren't conducive to healing and was part of the reason she was confined to bed for that time. We're still happy with the progression, but it looks like it might end up being closer to 5 days than the 2 or 3 the doctors had hoped would be possible. Everyone always says how healthy she looks, even when she's often not feeling well at the time. While at first we were surprised, it's happened so often that we now find it funny when we meet a doctor for the first time and they say, "you look so much better than you sound on paper." And it's not just doctors, it's the nurses, friends, and family. So it's easy to overestimate her recovery speed. We aren't disappointed with the recovery speed.
Friday, February 12, 2016
Day After / PCA Pump Rant
Karen has been pretty nauseous since the surgery. She hasn't been able to keep anything down, and the heaving from vomiting really hurts her stomach. That said, her pain level has come down. She woke up from her surgery with a pain level of 8 out of 10, but after a couple hours was around a 4 or 5. They were able to get it down to around a 3 today, but heaving always bumps the pain level back up to a 5 or 6. She has recently had a little bit of broth and that's stayed down. So hopefully things are starting to turn around. Her resting heart rate is still in the 90s - I'm not sure what that's about.
As they have done previously, they have Karen on a PCA pump - a Patient Controlled Anesthesia pump. It is set to administer a small amount of painkiller - hydromorphone in this case - once every 8 minutes, but only if you hit the button. The issue we had with this before was once she would finally get her pain level low enough to sleep, she'd soon be woken up by the pain. Last night her pain level was settling around a 5 or 6 when she didn't push the button, and once they stopped taking vitals the pain alone wasn't enough to wake her, so she was able to get some sleep. Today it's settling around a 4 or 5 when she's not hitting the button. We're now at the point where she can get her pain under control fairly quickly after waking, with just one or two doses from the PCA pump.
But I did want to rant about this for a minute because this was one of the most frustrating things for us in the past, and I don't think I ever succeeded in fully explaining it. After falling asleep, Karen would be woken up by her pain, which was around an 8 out of 10. Then she'd have to play catch up, 8 minutes at a time. And with pain medication it's always easier to stay ahead of the pain than try to bringing existing pain under control, especially when you can only take it slowly in small increments. And when she'd get really tired and fall into a half awake state, she could get to a point where her pain level was still pretty high but low enough to sleep. So she would only miss hitting the button once or twice before the pain would wake her up again. She would go all night and into the day with completely broken sleep, awake for a button press or two, and then asleep for 10 to 20 minutes. And they'd come in during the day and tell her she should be sleeping at night, not during the day! We had complained about it but it was suggested she couldn't sleep at night because she was half asleep during the day and got her day-night cycles reversed. We were also told if they used a constant drip with anesthesia this strong, she could easily overdose and stop breathing. The PCA pump prevents that because you'll knock yourself out before it gets to that point. (But aren't all these machines monitoring that? Surely they wouldn't have to wait until you stopped breathing before adjusting it?) I'm not sure the problem was at all related to her day-night cycle, and I see the advantage to the PCA pump when your pain level is settling in a range that won't wake you from your sleep, but when your pain is anything more, it just functions like a sleep deprivation torture device.
As they have done previously, they have Karen on a PCA pump - a Patient Controlled Anesthesia pump. It is set to administer a small amount of painkiller - hydromorphone in this case - once every 8 minutes, but only if you hit the button. The issue we had with this before was once she would finally get her pain level low enough to sleep, she'd soon be woken up by the pain. Last night her pain level was settling around a 5 or 6 when she didn't push the button, and once they stopped taking vitals the pain alone wasn't enough to wake her, so she was able to get some sleep. Today it's settling around a 4 or 5 when she's not hitting the button. We're now at the point where she can get her pain under control fairly quickly after waking, with just one or two doses from the PCA pump.
But I did want to rant about this for a minute because this was one of the most frustrating things for us in the past, and I don't think I ever succeeded in fully explaining it. After falling asleep, Karen would be woken up by her pain, which was around an 8 out of 10. Then she'd have to play catch up, 8 minutes at a time. And with pain medication it's always easier to stay ahead of the pain than try to bringing existing pain under control, especially when you can only take it slowly in small increments. And when she'd get really tired and fall into a half awake state, she could get to a point where her pain level was still pretty high but low enough to sleep. So she would only miss hitting the button once or twice before the pain would wake her up again. She would go all night and into the day with completely broken sleep, awake for a button press or two, and then asleep for 10 to 20 minutes. And they'd come in during the day and tell her she should be sleeping at night, not during the day! We had complained about it but it was suggested she couldn't sleep at night because she was half asleep during the day and got her day-night cycles reversed. We were also told if they used a constant drip with anesthesia this strong, she could easily overdose and stop breathing. The PCA pump prevents that because you'll knock yourself out before it gets to that point. (But aren't all these machines monitoring that? Surely they wouldn't have to wait until you stopped breathing before adjusting it?) I'm not sure the problem was at all related to her day-night cycle, and I see the advantage to the PCA pump when your pain level is settling in a range that won't wake you from your sleep, but when your pain is anything more, it just functions like a sleep deprivation torture device.
Thursday, February 11, 2016
Quick Surgery Follow Up
The surgery lasted roughly 3 hours and turned out well. The doctor said the mass was larger than he had hoped, but everything went as expected and was happy with the results. They removed the mass from her stomach and a good amount of muscle it was attached to, put a mesh inside her to cover the hole left by the tumor and the muscle it was intertwined with, and reversed her ileostomy. They plan on keeping her for 2 to 3 days, but it may be upwards of 5. Things may return to normal quickly over a week or two, or it may take several months. Karen's says either way she's happy about it. Her ileostomy limited so much of what she could eat, and prevented her body from absorbing some of the nutrients from what she could eat. She's hoping that in addition to being pain free, she will now have better energy levels and less fatigue.
Wednesday, February 10, 2016
Another Surgery
Last month, on the 10th, we met with the surgeon. He didn't have any real surprises for us. He wasn't happy Karen had to use so much pain medication due to the cancer in her abdomen, in and around her stoma, and said he could take out that growth. It's still right near the surface, and the other spots seem to be fairly stable, so he wouldn't go digging for them. This would be a fairly minor surgery compared to what she had been through in the past, but for any surgery she'd have to be off chemo for at least 4 weeks.
He told us the longer we wait to have it removed, the more it would grow, and the more surrounding tissue would have to be removed with it. Suggesting that if it does become unmanageable with pain meds in the future, it's possible to have grown so much that surgery might not be an option. As it is now, some stomach muscle might have to be removed with the tumor, and the intestines forming the stoma itself will have to be resected (recut). But he never said we "needed" the surgery, or even that we "should" have the surgery. He was very careful to just present it as an option, and to leave the decision entirely up to us. It's nice to have full control over important decisions when your life often feels so out of control.
I asked about what the oncologist mentioned, HIPEC, and he said it could be done again after a debulking surgery where they try to remove spots from all around, but this wouldn't be anything so drastic. I also asked if removing stomach muscle would make someone more likely to get a hernia. The answer is yes, but if much of the muscle had to be removed, he'd just put in a mesh right then and there to prevent any possible future hernias.
We were both leaning towards a having the surgery, so we opted to take a break from chemo for 4 weeks and meet with the surgeon again in a month. And that day was yesterday. We have decided to go ahead with the operation and had already contacted scheduling, telling them it was ok to schedule us for surgery after our appointment with the doctor. He agrees with our decision, and thinks it's best to do it now. The expected stay is five days, but depending on what they end up doing with her intestines, it could take up to a month or two to feel herself again.
They have us scheduled for tomorrow, but we don't know when yet. We have to call after business hours today to get a check-in time. This part reminds me of jury duty, where you have to call the night before to see if you've been excused. I guess if someone with an urgent need walked in today, they could be scheduled for tomorrow and push our surgery off to another day. Or maybe cancellations could move us earlier into the day.
So far when we've mentioned another operation to people, they seem to feel sorry for Karen. "Aww, I'm so sorry." But this growth is something we've noticed for a while now, even before we went on our long trip. In fact, Karen first noticed pain in that area over a year ago when she started chemo again. I remember her mentioning it and saying, "I hope it's just the cancer crying out in pain as it's dying." But we both suspected otherwise. This surgery will be a conclusion to that long and building concern, and we're both glad it's happening.
He told us the longer we wait to have it removed, the more it would grow, and the more surrounding tissue would have to be removed with it. Suggesting that if it does become unmanageable with pain meds in the future, it's possible to have grown so much that surgery might not be an option. As it is now, some stomach muscle might have to be removed with the tumor, and the intestines forming the stoma itself will have to be resected (recut). But he never said we "needed" the surgery, or even that we "should" have the surgery. He was very careful to just present it as an option, and to leave the decision entirely up to us. It's nice to have full control over important decisions when your life often feels so out of control.
I asked about what the oncologist mentioned, HIPEC, and he said it could be done again after a debulking surgery where they try to remove spots from all around, but this wouldn't be anything so drastic. I also asked if removing stomach muscle would make someone more likely to get a hernia. The answer is yes, but if much of the muscle had to be removed, he'd just put in a mesh right then and there to prevent any possible future hernias.
We were both leaning towards a having the surgery, so we opted to take a break from chemo for 4 weeks and meet with the surgeon again in a month. And that day was yesterday. We have decided to go ahead with the operation and had already contacted scheduling, telling them it was ok to schedule us for surgery after our appointment with the doctor. He agrees with our decision, and thinks it's best to do it now. The expected stay is five days, but depending on what they end up doing with her intestines, it could take up to a month or two to feel herself again.
They have us scheduled for tomorrow, but we don't know when yet. We have to call after business hours today to get a check-in time. This part reminds me of jury duty, where you have to call the night before to see if you've been excused. I guess if someone with an urgent need walked in today, they could be scheduled for tomorrow and push our surgery off to another day. Or maybe cancellations could move us earlier into the day.
So far when we've mentioned another operation to people, they seem to feel sorry for Karen. "Aww, I'm so sorry." But this growth is something we've noticed for a while now, even before we went on our long trip. In fact, Karen first noticed pain in that area over a year ago when she started chemo again. I remember her mentioning it and saying, "I hope it's just the cancer crying out in pain as it's dying." But we both suspected otherwise. This surgery will be a conclusion to that long and building concern, and we're both glad it's happening.
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