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.
Friday, February 26, 2016
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.
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