Here We Go Again

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

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

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

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

Still Waiting

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

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

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

2 To 3 Days Minimum!

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

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

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

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

Sigh, 2 To 3 Days?

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

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

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

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.

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."

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.