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.
Wednesday, February 24, 2016
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.
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