Brand New Day

Karen had a bit of trouble with pain last night, but managed to get some decent sleep anyway. She says it wasn't great sleep, but certainly better than she was able to get in the hospital. The doctors said recovery will be really slow, and it may feel like you're not moving forward, but to try not to compare one day to the next, and instead to think back to how you were a week ago.

What she found helped with the pain a lot at the hospital was to use a heating pad. So she put her heating pad on her stomach and fell asleep, only to wake up to burning hot staples. The hospital had an amazing heating pad that was temperature controlled with a water system which maintained a solid 42° C. It's comfortable enough to put directly on your skin or the clothes/gown directly above it. The one she owns is just a standard electric heating pad, so it gets to a much hotter 76° to 82° C, and can get too hot, even through layers of clothes.

A home health nurse came by today to set up future home health visits. It looks like there will be 3 visits per week for 2 weeks, and then 1 per week for another 2 weeks. They took her blood pressure and it's back to it's usual borderline hypotension. It was actually 86 over 52, which is lower than it's been the entire time she was in the hospital, but not unusual otherwise; so it would seem returning home has dropped her stress level greatly.

Some ostomy supplies were suppose to be delivered, but no order seems to have been put in - which is strange because they had called us about dropping off supplies a week ago. It seems like the social worker is to blame. We only saw her one other time before we left, and she didn't seem to keep up on what was happening.

Home Sweet Home

Well, we're finally out of there. They gave Karen some simethicone - you probably know it as gas x - and we just waited it out. They gave her the option of staying another night, but she was ready to go home.

SMILE and Grimace

While we were waiting on the release, 1:30 rolled around. Every Friday, from 1:30 pm to 2:30 pm, they play a BINGO-like game called SMILE. Instead of straight lines you have to make shapes; for example, a smile. Last time Karen won $12 in gift cards, this time she won $8 and I won $4.

Unfortunately, during this time Karen began having really bad abdominal pain. The two possibilities they are floating is either too much fiber, or gas issues. Either way, they seem to think it's related to eating food. It sounds like they want to hold onto her till 5 now to make sure it passes. Some of the nurses have been speculating that she won't get released till tomorrow now, but we haven't heard anything like that from the doctors. We're still planning on leaving.

Going Home

Karen is being released today at noon, but you know how the paperwork goes. She's on the maximum allowable Percocet dose, ibuprofen, Pyridium (for the bladder and urinary pain), and prilosec (to keep her stomach acid in check). They're going to prescribe her a nebulizer for home since they don't feel she would be able to use the rescue inhaler effectively with her diminished lung capacity.

She still gets up to a 5 out 10 on the pain scale from time to time, and she's having more pain around her stoma. The bladder still never drops below 200-250 ml or so, which seems to be an issue since the surgery. We saw increased urine output after switching switching pain meds, and Karen felt as if she were voiding more. But she still had quite a bit of pain, and shortly after posting yesterday, they did a bladder scan (using ultrasound) and found 243 ml in there. This caused quite a bit of emotional distress for her. It can get very painful and she was worried they weren't taking it serious enough. They've said since she's peeing frequently, and doesn't feel the urgency to pee afterwards, there's no need to be concerned. They've even gone as far as reversing their earlier recommendation to learn how to self catheterize, and are suggesting she just keeps doing what she's doing for a couple weeks and see if things improve on their own.

With all the excitement of leaving I almost forgot an important step in her recovery, solid foods. That was the last real hurdle before being dismissed. Karen had been building up to it for a while, but was a bit apprehensive after what happened last time. She started solid food yesterday with a late breakfast: a small bowl of cereal and an egg. They brought her food for lunch but she wasn't hungry yet and didn't want to push it. She ordered peanut butter and jelly with a side of peaches for dinner. They say her appetite will eventually return to normal. Breakfast today was the same, but with two eggs instead of one.

Soon

Yesterday Karen's diet went from clear liquids, to liquids, which is a bigger change than it sounds like. They also dropped the Fentanyl and tried out some different oral meds before ending up on percocet. Her pain level was tolerable enough to sleep, either that or the does was just high enough to knock her out. Either way, she got some sleep last night.

They say Karen should certainly be good to go home soon. We're hoping Friday. She's off the TPN now, and is cord, tube, and IV free. She's getting around a lot better and her voice is getting stronger after having had the NG tube out for a couple days. (If you're going to catch her in the hospital, now is probably the best time to do it.) That said, they need to do more bladder scans today; if she's still retaining 200 ml of urine or more, they want her to learn to self catheterize before being released. They say retaining that much urine can result in an infection. And, of course, she needs to try out solid foods at some point.

Moving Forward

Karen was doing well enough with her clear liquids that they removed the NG by yesterday evening. It's easier for her to talk with the NG tube out. It looks like she may be out as soon as Friday, but barring anymore setbacks, she should certainly be out by Monday.

After switching away from hydromorphone (Dilaudid) to Fentanyl, she seemed to have better luck emptying her bladder on her own. Apparently this is a potential problem with most of the stronger pain killers. She's still retaining 250 ml or so, and they say you feel like you need to go when you get above 300 to 350, but rather than doing the straight catheter every 3 to 4 hours, she opted to simply go to the bathroom every couple hours. So she didn't get much sleep, but this is progress.

More Catheter Trouble

It seems like Karen never gets two good days in a row. The catheter had to come out and go back in again, but not without several painful attempts to get working again. There's been issues with urine retention, even with the catheter in, since the original surgery on the 9th. Even the doctors say they haven't seen this before, as the catheter bypasses the sphincter entirely and drains directly from the bladder. We finally got to see a urologist who saw nothing wrong with any of the scans and just thinks it still needs more time. Which leaves us unsure if we should be frustrated that nothing is being done about it, or comforted they don't think they need to go in and fix the bladder. This is her 5th catheter and once it stops working again, they will teach her to use straight catheters, which are usually disposable or single-use products. Hopefully this is temporary, but it makes Karen worried things might not change.

The night nurse decided it was a good idea to hook the NG tube back to the vacuum after the hydromorphone made Karen nauseous. The vent on vacuum whistled all night which combine with all the pain from the catheter problems kept Karen up all night. Her heart rate didn't drop below 90 again, but has hanging around 100 this morning. Still, with the heart rate going down, and in an effort to make her more comfortable, the EKG has been removed.

In the morning, the doctors re-clamped the NG tube and want to have it out tonight or tomorrow morning. She still complains about it, but I think she's getting more comfortable with it. She says it's so painful going in, she doesn't want it out unless they're sure she won't need it again. She's on clear fluids again, and is happily sipping away at a Ginger Ale.

Sleep!

Finally another night with good sleep. It's been almost a week, but like the last time she slept well, her heart rate slowed down to a more normal speed. It slowed to below 90 this time. It seems the sleep helps the most with that, but maybe it's the other way around and her heart rate dropping lets her sleep better.

I think she's finally getting use to the NG tube, she isn't constantly spraying her throat with chloraseptic and I don't see her wincing when we walk and the hose wiggles. Speaking of which, her desire to walk is coming back and we're walking more again.

They still seem concerned about her increasing tolerance to the hydromorphone. They raised the possibility of oral ibuprofen again, but that requires stopping the NG vacuum for 30 to 60 minutes, which isn't much longer than the walks we've been doing. So they feel at this point, maybe she doesn't need it at all anymore. At some point they're going to clamp it for 4 hours and see how things go.

I'm Hopeful

Karen still has the NG tube in. It was very difficult for her to sleep with it in. During the night her stomach started hurting pretty bad and by morning she was nauseous again. She asked them to flush the the line really well and it started going again. Her pain level fell drastically and she felt better enough to sleep afterwards.

She seems to be building up a tolerance to the morphine. Well, technically it's a derivative of morphine, hydromorphone. It doesn't seem to last very long anymore. One of the doctors mentioned stopping the NG vacuum for an hour or so to give her oral ibuprofen, aka Advil. They said they can't give it intravenously, but I don't understand that.

While they still encourage walking, we don't go nearly as much as before they put in the NG tube. We have to have someone unhook the tube from the wall, close the end that comes out of her, and then secure the tube to the gown. And then reverse that to reconnect. Not to mention, despite being secured to her gown, the hose wiggles when walking and it irritates her nose and throat. Throw the sleep and pain issues into the mix, and it's hard to get motivated.

Last night, after two weeks of no solid food, and an on and off again - but mostly off - liquid diet, they decided to give her total parenteral nutrition, i.e. nutrients via IV. I'm not sure why they were resistant to the idea before, but I'm sure they had their reasons. Hopefully it's not much longer till she can eat again.

NG and SMILE

Karen has been nauseous on and off since the last update. She did vomit once more at night and again this morning. The doctors decided the best thing to do at this point was to put the NG tube back in and drain the contents of her stomach. She really hates the NG tube, but she was tired of the nausea and was ready to try anything.

Despite being fairly miserable overall, Karen's had a couple good hours here and there yesterday. She won $12 in gift cards for the gift shop playing BINGO SMILE. (And, of course, I won nothing.) We did do a lot of walking together, which is always nice. Sometimes we even went for 30 minutes at a time. Her incision is looking better and she was quite pleased to be allowed to shower for the first time since Tuesday's surgery.

Tough Going

Karen's been vomiting about once an hour and pretty much everything that went in has come back out. The doctors feel this is an ileus, and the bowels haven't completely woken up from her last surgery. They were overly optimistic in allowing her solid foods so soon. So for now she's been taken off liquids and solids, with the exception of a few small sips of water.

She was taken off the IV pain meds this afternoon as scheduled yesterday when they saw her pain level dropping. But with her puking up all her oral pain meds, she's in more pain than usual. They did eventually realize the problem and they gave her something intravenous. They're also pretty sure she's puked up everything she ate, and so that's over with. Once her stomach has calmed down a bit more, she will start back with a liquid diet again.

Bump in the Road

Karen finally got to eat some solid food yesterday; so that was 12 days without solid food. Unfortunately it made her nauseous and one of the anti nausea drugs made her loopy and dizzy, which left her stomach feeling unsettled. Needless to say, she didn't get much sleep last night. When they brought her breakfast, she lost her dinner. Skipped breakfast, and it happened again a couple hours later.

Yesterday I was happy to see her heart rate so much lower than it had been, but it slowly went back up throughout the day. Starting just below 100 when sleeping, hanging around the low 100s in the early morning, and climbing back to the 120s by evening. It didn't drop as much last night with the lack of sleep and stomach issues. Someone said another HIPEC patient had such a fast heart rate for so long they finally sent him home on beta blockers.

Progress

Karen's pain level has slowly been coming down, and she's had one of her best nights yet. Her resting heart rate has been in and around the 120s since the initial surgery on the 9th, and was as high as 145 yesterday, but is finally dropping below 100. And she's eating broth now - the breakfast of champions - and if things continue as they are, she might get to eat some semi-solid foods by the end of the day. Karen hasn't had solid food since the 7th, a few days before surgery due to a preoperative diet. Other than a bit of a fever at night still, things are looking great.

Another One of Those

Karen is back to her nights of broken sleep. The pain is, as you'd expect, worse than before the surgery. But she has a PCA again, so she can push a button to get morphine when the pain picks up. The downside is waking up after a short time in a lot of pain because you haven't been getting the morphine. Her heart rate is also more elevated than usual, but they say it's from the surgery.

Also, because she got the blood transfusions, she is even more immunodeficient than before, so even when she's out of intermediate care, they're asking for no visitors who are coughing or sneezing.

Out of Recovery

Karen's now out of recovery and in the intermediate care unit. She seems to be doing alright on pain. Her vitals are certainly better this time around. She also says she's able to breath better now; so maybe the air leaking into her abdomen was pushing up against her diaphragm before this?

Surgery Complete

The doctor says Karen's surgery went well. They found the source of the leak. It turned out to be her colon after all. It was in a section where they had removed a large tumor, and with the chemo from the HIPEC, it was unable to heal completely and had reopened. Her body was doing an amazing job keeping it in check, but the doctor said leaving it to see if it healed on it's own was added risk - and pain - Karen didn't need. They performed a colostomy an ileostomy, and she will need to have the stoma for 3 months. After which, they can reattach all the plumbing and things should work as they originally did.

Once More Into Surgery

She finished her second unit of blood less than an hour before wheeling her out of pre-op and into surgery. The operation is an exploratory laparotomy, and due to the nature of the surgery - exploration - they've not given us a time estimate.

Rescheduled

Karen's surgery has been rescheduled to 3:30 "or" 4:00. Seems someone else out there always has it worse. The first unit of blood is done and they've started on the second. So far that looks good, no reactions. An ostomy nurse has been in to mark a location for a possible (but unlikely) colostomy. Her pain level is still somewhat reasonable and she's been sleeping a lot.

Sleep and Surgery

Karen got a good night's sleep for the first time since the surgery. Her pain level is down to a 3 out of 10, also near to the best it's been. They did an x-ray of her abdomen and noticed more air than last time. More air tends to mean the hole is getting bigger instead of smaller. Since the fluid was sterile the leak is probably higher up in the intestine, or may even be a perforation in the stomach. This could potentially be very bad; so the doctor who did the majority of the surgery last time, wants to do an exploratory surgery to look for the leak. Karen said while she is feeling better, something still feels wrong, and agreed to the procedure. This means she will need the blood transfusions after all, since she will lose more during the operation. The surgery is scheduled to start at noon, and she will be getting the transfusion as soon as possible.

No Blood Given

The doctor who performed the larger part of the surgery on the 9th came back in from a conference. He was the one everyone else was waiting on. He says since the fluid they removed is sterile, there's nothing urgent happening there. The bigger concern is the air. He said the pain seems to be in the same areas as the air. To have that much air a week after surgery, there is most likely a small leak in the intestines, but too small they can't see it on the CT scan. He says the only way to know for sure is to open her up to see, which is overkill at this point; the body will close small holes just fine on it's own.

He also canceled the blood transfusions. He said the risks and negative effects on the immune system outweigh the benefits, especially for cancer patients.

Lab Results

It doesn't appear the fluid is from a leak in the colon or intestine because it was steril. This means a surgery is unlikely after all, although more doctors are reviewing the results. We should know by tonight what they will do. Until then she's still NPO, so, no liquids.

They've decided to upgrade the blood transfusion to two units.

Back From Ultrasound

They took Karen to a steryl ultrasound room where they extracted roughly 60 cc's from one of two pockets of fluid they found. Lab results will take roughly 1 to 2 hours. It's looking more like a surgery will be necessary. During the ultrasound they also found she's retaining urine, so she's getting a catheter yet again. Third time's a charm?

Blood work they ordered this morning just came back. Her hemoglobin is low and they've decided to give her one unit of blood (450 ml).

Peritonitis

The CT results are in and it looks like she has fluid in her abdominem. They called it peritonitis, and is most likely the cause of the fevers. They will remove some of the fluid with a needle, guided by ultrasound. It will be analyzed to find the content and source. No ETA on when they will do this or when they'll get the results, but it should be fast. Best case scenario is it's just leftover water from the surgery, but that's pretty much unheard of after 7 days. It could also be an abscess or a leak in the colon or intestines. If it's the later, she will need surgery again.

Trouble

What started out as a good night for Karen took a turn for the worse. It seemed like she was finally able to sleep well, but it didn't last. First there was some stiffness and (more) soreness. That was followed by chills and sweats, and then a fever of 103 °F. She seems to have some kind of infection. They're worried it's related to the operation, but they took out the catheter just in case it's a bladder or urinary tract infection. She's able to void without it, so that's good. They took her off fluids again, but she does get to drink a bottle of disgusting contrast for a CT scan.

Scary Night

Karen had an asthma attack last night. She didn't have a rescue inhaler so she had to wait for the nurse to call the doctor and get someone over to do a breathing treatment, which was torturous for her. She was having trouble breathing, but just had to wait. They put oxygen on her immediately and her oxygen levels were ok, but not being able to take anything but a shallow breath really left her rattled. To compound the fear of not being able to breath, they aren't going to give her a rescue inhaler, just regular breathing treatments. They're suppose to negate the need for the inhaler, but the idea of it happening again without her having a rescue inhaler really made her anxious. They gave her something (lorazepam) to help her calm down.

They're not sure what triggered the attack, but it could be pain induced. Overall, the pain meds still aren't cutting it. The only good thing about this is the lorazepam knocked her out, so she managed to get some sleep when all was said and done. She has some visitors coming today but is thinking of telling everyone to wait a couple more days.

Pain Again

It's been a couple days since they halved Karen's morphine dosage, so yesterday evening they took it away entirely. They're trying to get her off the IVs and on oral pain killers. They put her on Norco - which is pretty much the same thing as Vicodin - but it just wasn't cutting it. Her pain level slowly climbed all night long and they eventually had to give her morphine again, but only every couple hours, not as a constant drip. So, once again, it was another rough night.

On the positive side, she was doing well enough that they didn't think she needed the morphine. She's completely off the oxygen. She's eating broths and Italian ice now. Oh, and she's even walking without a walker now. The PT guy "signed off" on her, which means she's free to get up and move or walk around without supervision.

Looking Good

Karen's doing a lot better. She has started getting up a couple times a day to walk around, and only needs oxygen intermittently at this point. She's allowed - and able - to drink clear liquids now; which also, somehow, includes black coffee. She's still not sleeping very well, although ironically, had a good long nap after finally having coffee again.

They are back and forth with the catheter, removing it then putting it back in. But other than that, things are looking good.

Vitals Have Improved

Karen's been moved out of the intermediate care unit, into a - more or less - regular unit. The area she's in is still extra cautious about her catching something, same rules about no flowers, and oddly enough, you're not even allowed to touch the doors leading into her ward. You have to wave your hands in front of a sensor to open them.

Her pain level had been going down, so they cut her morphine dosage in half. So she's in more pain again, and still not sleeping well at night. They tell us that it's likely an issue with her sleep cycle, although I'm sure the pain is still part of it. On the positive side, with less morphine, she is more alert and coherent.

Another Night

Another night with ups and downs. During the day she manages her pain by pressing a button every 8 minutes when she's in pain to administer morphine - more specifically Dilaudid. But at night, when she falls asleep, she'll wake up in less than an hour in a lot of pain because the pain medication has worn off. So she'll fall asleep at a 4 out of 10, and wake up at a 7 or 8 and not be able to get it under control again for quite a while.

The good news is, despite being sleep deprived, she does seem to be in less pain overall. They've also just taken out the tube that vacuums the acid from her stomach. So that should make her more comfortable as well.

Long Day

It's been a long day. There's been some painful moments, but it's been back and forth. As of now they've got the pain down to a reasonable level and she's resting calmly. They haven't let her sleep much during the day to try and get her back on a proper day night schedule. While they wouldn't turn anyone away, they'd prefer if you waited till she was out of the intermediate care unit before visiting. She's expected to be out by Friday. I also found out they don't allow flowers for the patients on this floor.

Rough Night

There's been some trouble managing Karen's pain level. When she woke from surgery she says, on a scale from 1 to 10, her pain level was a 12. While they did bring it down, she's back up to a 7 out of 10 and hasn't been able to get much sleep.

Out of surgery!

Everything went well! The second doctor was very happy with how things went. She's in recovery now, but it will probably be another hour or two until she's off the breathing tube and out of recovery.

So Far, So Good

The second doctor has completed the cytoreductive surgery and has begun the final stage of the surgery, the HIPEC. There's roughly 2 hours in surgery remaining.

First Doctor Finished

The first part of the surgery is complete. The doctor said everything went as expected for his part of the surgery. The second doctor has begun his part of the operation.

Surgery Has Begun

Karen has just been wheeled into the surgery room. Initial delays were caused by the surgery before her's running over.