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Father About to Undergo Radical Surgery

13 years 5 months ago #5199 by Patricia
when i say heart medicine i mean blood pressure drugs as well as anything else related to the heart. First of all does your dad have a cardiologist you can call in for a consult? Who gave him his blood pressure drugs in the first place? Call that doctor..tell him whats going on. Or ask for a consulting cardiologist from the hospital.
There are advocacy groups to help you with all your problems you're having..you're doing a good job....but just imagine if you hadn't been there........all you have to do is look at the statistics of deaths in hospitals across the US caused by wrong meds or not giving meds.........its astronomical. There should be a case worker in your hospital...go seek her out...maybe she can help you with Curly, Larry, and Moe who are attending your father now.
The lopressor is causing his headaches...thats a common side effect...thats the "m" drug.
I'm sure they are not listening to you about the possible causes of the ileus right or have you not brought that information up? If you only have 3 minutes and your dad is in there my guess is its been ignored. Don't let them treat you like an idiot. Ask the questions..if they don't like it its because they don't know the answers.....With my fathers botched bypass surgery i went right to the top cardiologist of the hospital...he was appalled....Do what you have to do.
Anyone got a better idea on this panel? Pat

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13 years 5 months ago #5198 by harleygirl
Patricia, I'm not sure what you mean by a "local advocate". And, my father does not take any heart medicine, only BP medication called Tenex and a diuretic. As far as I know, only 1 bag of electrolytes has been hung and that was on Tuesday.

Last night and today, the blood pressure is still a roller coaster. The internist, who is making calls from home because he is ill, prescribed a stronger Catapress patch and said to keep ministering the other 2 drugs, which in my opinion are NOT working. How long do we continue to wait to see if his mix-and-match Rx will work? In the meantime, Dad is having headaches, stomach aches and hot flashes from the metoprolol.

The internist wants him in bed until his pressure goes down, the urologist and general surgeon both want him up moving. Don't they talk to EACH OTHER??? Today, the internist sent a guy from Physical Therapy to get Dad moving. By the time he arrived, Dad had already been sitting in the chair and had gone for a walk of a good length, for the first time anyway. I know how important walking is, so I insist we do it no matter how much trouble it is to unplug all the stuff and clamp off the NG tube. After he had shown Dad some exercises, he commented that he wondered why he was there since Dad is fully independent and can walk just fine. I think the internist sent PT to help Dad learn how to move around while sitting or lying down because he wants him to stay in bed until the blood pressure thing is resolved.

Today, the nurses on our floor were participating in something called "skills testing" so they left one or two nurses to cover ALL the patients while the others tested. I pressed the call button once and nobody ever came! When I went to find someone to help get Dad back into the bed from the chair, I couldn't find anyone! There were bells and alarms going off everywhere!! Is this lack of care and concern prevalent in all hospitals? You suggest moving him elsewhere, but how do we know the next place would be any better? My aunt is currently in another hospital in our city and they neglected to mark her for a brain scan before sending her down to have brain surgery! Needless to say, the operating room sent her right back up to her room and the surgery had to be rescheduled resulting in a change of surgeons as her surgeon had other patients scheduled.

The thing that scares me to death is that I don't know the skill level and competency of the nurses where Dad currently is. It is not a confidence builder when your nurse can't get the medicine to go into the IV and has to seek help from another nurse who points out that she is trying to put the med in the wrong tube!! And these are the people that I am relying on to follow doctor's orders and make sure my Dad gets the RIGHT meds at the right time?? And, we get a different nurse every shift which means that the previous shift nurse has to bring them up-to-speed on all the patients she had  been working with that day. Think there's a chance something might be left out?

I'm tired, I'm scared, and I'm not real sure some of these caregivers know what they are doing. One nurse brought Dad the wrong meds the last time we were there (last week) and I happened to catch it and tell her that they were not Dad's meds. She didn't believe me (what are the odds?) but later came back with the correct meds. What do people do who don't have someone like me to be there to catch all potential life-threatening mistakes?

And, this general surgeon the urologist brought on to the case is a real piece of work! I think he is trying to say all the negative things about Dad's condition he can within the 3 minutes he has allotted for us. Every time he visits, he proceeds to tell Dad over and over that he doesn't want to operate on him because of how hard it would be on Dad and ON HIM! Can you imagine?  He's a real charmer, that one. After this guy leaves the room, Dad looks like a truck has hit him. My Mom wants to tell the urologist to tell this surgeon to keep his dang mouth shut and stop saying all these negative, depressing and scary things to my father! I don't blame her. This general surgeon spends more time looking at the on-going construction outside Dad's window than he does in discussing Dad's case. If he is as good as he is arrogant, the he is really good. I wonder. Today he said he hopes nothing happens over the weekend to Dad as he prefers to operate during the week and besides, he will be out of town this weekend! This scared Dad immensely and there went the blood pressure. This jerk came back a second time to tell us some blood work result and I called him on what he had said about not needing to be operated on over the weekend. I told him he had caused undue stress to my Father and I didn't appreciate his comment. I personally think we should fire all of them and find some doctors who can figure out what is actually going on with my Dad. I have no idea how to go about doing that.

This is the most difficult experience of my life. And to top it off, a 18-year-old friend of the family was found dead on Tuesday from an apparent drug overdose! When it rains, it truly pours.

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13 years 5 months ago #5187 by Patricia
metroprolol (generic for Lopressor)and catapress are blood pressure drugs...beta blockers. The metroprolol can not be stopped abruptly..it must be tapered off or there is a risk of heart attack. Vasotek is an ACE inhibitor..........so your dad is on 3 drugs for blood pressure. What was his heart drug at home? Giving him the Lasix will continue to screw with his electrolytes so i'm hoping that he's getting a bag of that also.
And since stellar doctor did not do the Golytely there would have been residue in the bowel below where the ileus is. This guy is a gem!
I don't know Harley...if it was my dad i would air vac him the heck out of there to a competent doctor and hospital. I feel for both of you. Is there a local advocate you can contact in town? Go to the social worker at the hospital and ask and also tell her your concerns........Pat

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13 years 5 months ago #5176 by harleygirl
The saga continues! Wednesday Dad was looking really bad again. He had no energy and his blood pressure continued to be off the charts. I asked the nurse to page the internist and he came in a while later and prescribed a blood pressure drug that required constant monitoring for heart function. So, we had to move back to Progressive Care for this. In the meantime, they started him on Vasotek (which we used last time we were there and it did not work) and put a Catapress/Clonidine patch on him which I found out doesn't start working for 2 to 3 days. The drug that must be monitored is called metoprolol.

When we got to Progressive Care, it was shift change (of course) so nothing was done by the day shift who waited for the night shift to take over. In the meantime, my Dad's pressure was approaching 200/88! When the night shift came, it was a male nurse that we had previously had three nights during our stay there last week. He is a know-it-all and likes to talk down and lecture to me when I ask a question. He's probably 25 years younger than me. Needless to say, he was not real happy that I was staying the night. He hung the drip of Vasotek and I mentioned to him there was also supposed to be a drug that started with an "m" that was to be hung and monitored and that was the ONLY reason we were back to PCU. He said "No, there is not another drug." As you all know, I write EVERYTHING down that the doctors say and prescribe. I had a hard time understanding the internist who is from Africa, so I only knew the drug started with an "m" and was for blood pressure and must be monitored as it can slow the heart rate. I kept insisting and the nurse kept ignoring me.

As my Dad's pressure kept creeping steadily higher (a few times going as high as 207 over 91!), I kept asking him to check again for the order for that other drug. Instead, he kept lecturing me on how fluids in the body effect blood pressure and how we want to lower it slowly. I told him the key word there was LOWER and that was not happening. A few times he was down right condescending and really angry. Now I know I should have picked up the phone right then and paged the doctor at 2AM. I will not hesitate to do so if this situation comes up again.

About 5:45 am, this same male nurse came in with the missing medication that started with "m": metoprolol. This was after about 12 hours of INCREDIBLY high blood pressure numbers. All I could think about was stroke. Anyway, he proceeds to tell me that the medication HAD BEEN ORDERED, but it was at the back of all the orders and he just missed it. HE JUST MISSED IT?? He then had the nerve to say "I wish I had found the order sooner." Ya' think?? My Dad wished he had found it earlier, too.

When the day shift came on, it was also a nurse who had been assigned to Dad last week. I expressed my concern on the blood pressure numbers (measured by one of those portable machines that roll from room to room for taking vitals). After a few hours of monitoring the numbers, some of which were as high as 207/99, I INSISTED that she page the doctor. The doctor called back and added hydrolazine (or something that sounds like that) and Lasix to the mix. What he really needs is to take his REGULAR blood pressure medicine, Tenex, which works great for him. Only problem is that Tenex does not come in IV form and he still has the NG tube. We may try to see if he can swallow a Tenex pill and then they will clamp off the NG tube to allow it to absorb. That's what the nurse and I talked about anyway and may present that idea to the doctor.

Dad had a bowel movement without any suppositors today and has been passing gas. I think that's a great sign, but the cocky general surgeon really rained on our parade by saying a bowel movement is not that big a deal since the stool could have been there a long time. What difference does that make? Something is working in order to have the movement, right? Dad's abdominal x-ray taken this morning showed distention and the general surgeon wasn't pleased with the x-ray outcome. He does NOT want to have to open Dad up again to fix a bowel problem as he said intestines after surgery like Dad's "turn to concrete." He also said that 80-year-olds do not have the surgery Dad went through as this procedure (cystectomy/prostatectomy) makes 20-year-olds cry. But he did say it was the best way to get rid of the cancer. Remember, he's the guy the urologist called to handle the bowel obstruction possibility (which all 3 doctors still think is ileus).

Dad was very down today and feeling crappy. He is now questioning his decision to have the surgery to begin with and wonders what will go wrong next. He says they fix one thing and something else goes wrong. Unfortunately, up to this point, that has been the case. The urologist regaled us yesterday, after we transferred to PCU, with a list of "things that can go wrong". This included blood clot, heart problems, bowel obstruction, to name a few. All this thanks to him and his inability to sew a proper suture (in my opinion anyway.)

I came home to sleep for a few hours before I go back to spend the night. Hopefully, the new meds have gotten the pressure under control and I won't have to battle with the night shift again. If I hadn't experienced this nightmare of incompetence myself, I would be hard-pressed to believe that this stuff could happen in today's hospitals in the US! I'm here to tell you, IT DOES!!

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13 years 5 months ago #5144 by Patricia
Bless you Harley.........Lordy. WEll i hope it is Ileus as thats not a mechanical obstruction and usually does not lead to rupture.
Ileus usually occurs within 24 to72 hrs after abdominal surgery. It can be caused by infection (which your father has)......but it can also be caused by disorders outside the intestine such as abnormal levels of blood electrolytes...LOW POTASSIUM or high calcium levels (which your father was exibiting signs of with the hypokalemia)..it can also be caused by certain drugs especially opioid analgesics and anticholinergic drugs which i'm sure he's been given. And another source is an underactive thyroid gland.
Just a heads up on causative factors.
He should not be allowed to eat or drink anything until intestinal function normalizes..He should be given IV fluids and electrolytes such as sodium, cloride and potassium.
As for his blood pressure his systolic is off the chart...the diastolic is fine.......the heck with what your father says...tell the nursing supervisor he hasn't had his heart drugs for 3 days....but don't give him any diuretics. What is his heart drug?
Your uro actually thinks things were running smoothly huh? Guess what my reply to that is???????????? Pat

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13 years 5 months ago #5143 by harleygirl
This is Tuesday and I'm just home from a full day at the hospital starting about 6am so I can be there when the doctors show up. The urologist came in this morning and Dad mentioned to him how long his stents are now and that he is having a difficult time getting them into his pouch. That was the first time I've seen what I interpreted as a worried look on this guy's face. He was very concerned about the stents having slipped out and sent Dad down to X-ray (yet again!) to see where the stents actually were. He told Dad there were two ways to get the stents back in place: one through the stoma and the other in through the kidneys from his back! Yikes! Needless to say, Dad was worried that he was going to be cut on yet again. The urologist told me that we now have some "struggles" and reminded me that we had breezed through everything up to this point. Like I needed reminding!

I was in the x-ray waiting room for over an hour which, of course, concerned me since it was a simple abdomen x-ray. Then I get the phone call from a nurse telling me that the doctor and the radiologist (same one who put in Dad's pelvic drain on Sunday night) had talked and it was decided that while Dad was there, the radiologist would go in through the stoma and put the stents back into the kidneys where the urologist wanted them. The radiologist also injected dye to determine where the leak is and found it on the left side where the ureter was sown to the conduit. He absolutely positively assures us that if they keep the area dry the leak will heal itself in a matter of a few weeks. He said the urothelium tissue is very forgiving and does heal itself.

Both the radiologist and the urologist are now certain that there is NOT an obstruction to the bowel. They say what occurred is called "ileus" where something touches the bowel and it shuts down. They say when the fluid and infection are gone, the bowel will start working again. Dad does have bowel sounds which, according to the general surgeon who has remained on the case, are getting stronger each day but still not "normal". The general surgeon said he is going to use "tincture of time" to get the bowel working again and the "bowel will tell him what to do".

The urologist told us that the blood cultures showed that the infection in the gut was a skin organism. How the heck did that get there?? Today the white cell count was approaching normal but the two different antibiotics are still being given. I was mistaken when I said he was already on TPN. What they were giving him was nutrients and electrolytes. The actual intravenous feeding started tonight. If he can tolerate it, I think it will help him to get stronger.

He finally felt up to sitting in a chair this evening and he got fresh linens and a sponge bath. I used a shampoo cap on him and he shaved and brushed his teeth. All this activity wore him out, but it was good to see him vertical for a change. That drain connector he has to sit and lay on certainly doesn't add to his comfort and his scrotum is now irritated due to chafing. What next?! He is not taking his blood pressure medicine since he can't have anything by mouth and his pressure ranges between 143 and 171 depending on what's going on. The bottom number ranges from mid 60's to mid 70's. I asked the urologist about this today and he said that we'd handle it the same way as when he was here before, yet no internist has been called in on the case to manage these things. So, it's been 3 days now with no blood pressure meds! Of course, Dad wants me to leave it alone and not mention it to the doctors. Here we go again!

We are on a regular floor this time and the nurse taking care of Dad is in charge of caring for 7 patients all of whom had surgery of some sort! We have yet to see the same nurse twice. All day and night you hear the constant beeping of IV monitors that have run dry. There are not enough people to take care of all these patients.

I hope to have him up walking tomorrow. We need to get some gas stirred up and get the bowel going again. The x-rays did show gas in the colon which wasn't there before. I broached the subject of getting a different urologist to sort all this out, but he wouldn't hear of it. Even after all this, he still has faith in this urologist. Yes, the same one who didn't order bowel prep and somehow left a hole for urine to leak through!! I am quickly losing all faith in the medical community. This whole experience has been a nightmare, one from which I hope we wake up well!

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