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.
Monday, February 15, 2016
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.
Subscribe to:
Posts (Atom)