Father About to Undergo Radical Surgery

HeLLO HARLEY...is there anyone in there? Have you read any of the posts? Do you just write? Of course it was something the Doctor did and didn't do.........since you can't see it i suggest all the writing you've done be given to a really good lawyer and let him sort it out.............and YES it is old fecal matter coming out of him...do you have any idea of how many feet of intestine you have in you..........not giving him the GoLytely was a major mistake........one of many. Pat

The CT scan with contrast today showed no bowel obstruction. Thank God for that. The urologist decided the pelvic drain was not working well enough so he sent Dad down to radiology to have a larger tube inserted into the ureter that is leaking to help get the urine to drain out the stoma and not out the leak. They ended up having to go in through the kidney in the back and run a wire into the kidney and down out the stoma so they could run a larger catheter into the ureter. If this doesn't fix the leak, then they can either drain the kidney directly out of the body to keep the ureter dry to heal, or cut him open again and sew the leak up.

Poor Dad! There seems to be no place that he hasn't been cut, poked and prodded. The radiologist today told us to get him up after the sedation wears off and have him walk and sit in the chair. To my utter amazement, Dad was all for this and has walked twice since having the most recent procedure this afternoon. The physical therapist gave him 3 harder exercises to do today and told me that my Dad is "his superstar patient"! I have a hard time keeping up with Dad when we walk and I push the IV pole!

Each day is a struggle to make sure the nurses give the correct meds at somewhere close to the appropriate time. Night shift is the worst. I'm not sure where all those people go, but at times there is nobody anywhere that I can see, not even at the desk where all the patients' heart rates are supposed to be monitored.

Dad's next hurdle is to get the NG tube out that he's been enduring for 8 days now. He has GREAT bowel sounds (according to the doctors) and has passed some gas and had two bowel movements so far. However, since he didn't have bowel prep before the cystectomy, the general surgeon thinks that fecal matter was left from before the surgery. Not sure if I'm buying that. Something had to move that stool out of the body. The tube has really irritated his throat to the point that talking and swallowing are almost unbearable.

I want so desperately to know why all this happened to Dad. He got through the actual surgery so very well only to have all this other stuff happen. Is it something the surgeon did or did not do? My guess is we'll never know. The important thing is that Dad make it through all these awful complications and come out on the other side a cancer survivor!

I hope you have a better lawyer than you do a urologist. Pat

Dad was up in the chair yesterday and walked both with me and the nurse and also the Physical Therapist the internist ordered.  We had walked 2 more times before I left my overnight "shift" to come home for a little rest.

The urologist came in this morning and told Dad that the abdominal x-ray he took yesterday apparently looked the same as the one from the day before (although he admitted he hadn't seen it but had talked to the general surgeon he called in on the case --the one who is out of town this weekend. Guess he called him long distance!) He thinks it is an ileus, but when he talks to my father, the possibility of bowel obstruction in always brought up and with it, how awful the surgery is, especially for someone his age. He never apologizes for putting Dad through all this hell, as that would be admitting he SCREWED UP!

He ordered a CT scan with contrast and a gasograftin (or something like that to determine gas location) for Monday, so Dad has the rest of the weekend to worry about what is causing this problem. He has not passed any gas or moved his bowels since Thursday. Dad looks physically as if he has given up. He told me he just wants to take everything out and go home. He thinks prisoners of war are not tortured this much! I tend to agree.

My brother went into the hall with the "stellar" urologist and asked him if he couldn't just say ONE POSITIVE THING to my father when he visits. Maybe "your lab work looks good." Or, "your pelvic drain is doing just what we want it to."? The uro said he would not give false hope nor lie to Dad. Fine, we didn't ask him to. Maybe it will turn out to be a bowel obstruction. If so, there's plenty of time to get Dad upset then. Now he has to think about all this over the weekend while his doctors travel the world! I asked the uro if we couldn't give the ileum more time to resolve on its own since Dad his hooked up to an NG tube and the pelvic drain is working. He said we could but didn't want to wait too long. Also, the NG suction is sucking a lot of gas from the stomach. Why not pinch off the NG tube and let his own stomach take over to get rid of the gas? The uro didn't like my idea and said we would continue with the same plan (which is NOT working, by the way.)

Dad is talking about just pulling out all the drains and tubes and going home. He is down and depressed that this had to happen, as are we all. He wasn't this depressed when he received the cancer diagnosis.

Harley...there is a chain of command at all hospitals......find out who is in charge..go directly to him. Call the uro and tell him they're refusing. Find the hospitals case worker...go to her/him. If you can't do it...tell your brother to do it.........be like Shirley McClain in Terms of Endearment .......they're walking all over you.........Somebody needs to yell at somebody!! I don't know what else to tell you...i've given you the ammunition..........shoot it..............Pat

My brother just called me from the hospital and said the ET department REFUSED to send a nurse to help my Dad change his wafer and pouch. They say he's had 3 visits and should be able to do it himself. What they are NOT taking into consideration is that he's had a major event that has caused tremendous belly swelling and he can't see his stoma (I know, he could use a mirror) but there are stents that are so important that the urologist told Dad NOT TO CHANGE THE BAG AGAIN!! My Dad has already accidentally pulled the stents when he first was pouching himself and they got caught in the snapping mechanisms.

He needs help with this!! How can I get them to understand and send someone to help? I don't feel qualified or capable to do it. Besides, my family has never been one to be undressed around each other. My father's dignity is already all but out the window with the callous hospital personnel who have no qualms about throwing back the sheet and gown and let all be exposed to the world.

Can the ET department refuse to send help if the doctor has ordered it?