Expectations after radical cystectomy & neobladder

GOOD NEWS!

Afternoon update on my father. Post-surgery day 16.

I called and spoke with my mother. He had a degree of fever at 5 a.m. this morning but has had a normal temperature since then.

He has had THREE - count 'em - THREE walks today. (This is the best he had done since he came home from the hospital last Thursday.) AND, the day isn't over yet. I am hoping to take a walk with him this evening.

He had Carnation Instant Breakfast for, er, breakfast half of a Gatorade about mid-morning and [drum roll, please] tea and peanut butter toast for lunch. All of it has stayed down.

Mike, I do not know what theories they may have had regarding the fever. They simply told him to take Tylenol to try to bring it down. Hopefully, we have seen the last of the fever. Since they thought the antidepressant may have been increasing his nausea, they took him off of that and did not prescribe anything else. I do think that his depression has improved, though. The doctors took him off of oxycodone yesterday morning. Perhaps that is why he is feeling like walking now??? Maybe he was too fuzzy-headed from the medication. Just a thought.

Harleygirl, I am so sorry to hear about the complications your father had. I hope he recovered well. My father seems to have improved today. However, if he worsens over the weekend, I will insist we go to the ER and specifically ask them to check for that possibility. Thank you so much for the suggestion.

Pat, unfortunately, I wasn't able to go with my parents to this last doctor's appointment, so I am getting all of this information second hand. I do not know what other bloodwork or tests they may have done at that appointment. They did prescribe Phenergan and that seems to be helping with the nausea. His pain level has improved and the doctors took him off of oxycodone yesterday morning. Thank you for the link. I had it in the back of my mind that I had heard of having a normal white blood count but still having sepsis, but I didn't have anything at my fingertips.

Hopefully, he is on the mend! I will keep you informed. Thank you so much for you input! It is extremely comforting.

Carol

So they just did a blood count on him..nothing else? Brilliant.
Did they prescribe an anti-nausea? They should as its a very common problem after this surgery.
What pain meds is he on...don't abruptly discontinue but try to wean him down. Sometimes the very drug to ease pain becomes the source of it. The re-bound effect. It happened to me and thanks to my husband who without any medical training whatsoever convinced them to wean me down...and gee not only did i come out of my Jeckyl/Hyde personality i magically had only pain that could be managed with Tylenol.
I'm not saying this is the case but something to be considered. If he is in dire pain then they have missed something.
Those anti-depressents are pretty tricky...they can have the exact opposite effect and most take 2 to 3 weeks to work if they are going to work.
Now read this for occult bacteria...and have further tests done on your dad........
www.ncbi.nlm.nih.gov/pubmed/20674238
apparently you can have a normal white blood count and an infection. Make them do the work.
pat

My Dad has an ileal conduit and when he had his surgery 3 years ago, he was dismissed from the hospital, went home and felt lousy for a couple of days. On the second day out, when he developed fever and started vomiting, we took him to the ER and it turned out that he had a leak where the ureter was sown onto the conduit. Consequently, the urine was leaking into his abdomen causing all sorts of problems.

They put in a drain (which came out his backside and was uncomfortable to lay on!) to drain the fluids out of his abdomen and also inserted an NG tube while he was awake (not a pretty process!) For this problem, he was in the hospital for 18 days which was longer than for the original surgery. He also developed an ileus as a result of the leak.

A leak is a serious problem and I think your Dad's doctors should investigate this. Have they considered it could be a leak? They symptoms sound like what my Dad had when he had a leak so it might be worth checking it out.

Hope he gets to feeling better soon.

Carol,

Did they have any theories on the fever?
If he's having bowel movements, then he likely doesn't have a blockage. If the phenergan isn't working well for the nausea then you may want to inquire about switching to Zofran as Pat had mentioned earlier.

Are the suggesting anything to bring/keep the fever down?

If at all possible, people should probably convince him to walk more and walk with him. It really helps in getting people to feel better. It is typical to not feel like walking at all but it is important. Check this with the doctors first but they usually stress this. If he just waits until he feels like walking things can just get worse over a much longer period of time.

Did the doctors have any theories on why he seems to have gotten worse since coming home from the hospital instead of better? Seems like they may need to be pushed for answers here. From what you've described, they have stated a couple of things they don't think are the problem but you haven't mentioned anything about what they think the problem(s) may be.

Did they change his antidepressant to something that does not cause nausea? I'm not sure how significant the antidepressant is with regard to the nausea compared to the pain meds. Of course some are worse than others but if you look at medical stats on tests of anything (including placebo) you will pretty much always find headache and nausea on the list. Whenever they do the tests they have to list everything the person mentions. However, if the nurse said the antidepressant is known for causing nausea, then it likely is. Most pain meds are notorious for it and I think pretty much everyone on this forum has experienced it first hand.

You might want to ask the docs about either reducing the pain meds or switching to something else that doesn't quite cause the same level of nausea.

Sorry for all the questions but it just doesn't seem like they are coming up with many answers so you might want to have somebody run through a list of questions like these (and whatever else you can think of) with the doctor(s).

Mike

Update as of last night:

He went to see his surgeons yesterday morning. Both of them seemed very confidant that he did not have a bowel obstruction. They also did blood work and found that his white count is within normal limits.

He continues to feel “rotten”. My mother called the surgeon and informed him that my father’s fever had climbed to 102.6. The surgeon told her that, since the white count was normal, he did not believe it was an infection.

Pat, thank you so much for the high-calorie suggestions. We will definitely try those out. He was a good weight prior to the surgery, although a little on the thin side. However, I believe he has lost several pounds in the last few days.

I brought him a banana milkshake last night and he was able to drink about half of it. It seemed to sit well on his stomach. I asked him about an hour later if he could drink some Gatorade and he rejected that, saying that he did not want to vomit again. He is still battling nausea and is not drinking enough. I can only imagine that retching after abdominal surgery had to be very painful. He did walk some yesterday, but it was necessary in order to get him to and from the doctor’s office.

My sister and I were both there last night. My sister took my mother out to get something to eat. I think leaving the house may have done her some good. I stayed and visited and helped my father. He seemed to perk up during this time and his fever went down some. My sister and I are going to try to visit as much as possible. Her husband works nights and was planning on coming over some this morning.

Carol

Thanks Pat.