Well, the surgery was done on Wednesday and lasted over 7 hours! Seems Dad had a boatload of adhesions that the doctor had to deal with which increased the operating time. The doctor said that Dad did well and was stable the entire time. They had to give him one unit of blood near the end of the operation.
Turns out you all were right about the bowel prep. On the morning Dad checked into the hospital I decided I couldn't keep my mouth shut any longer about the bowel prep issue. I went into the hallway and told the nurse that he had not had any bowel prep. I could see that this surprised her and she said she would make a note of it on the chart.
Evidently, the nurse mentioned my concern to the doctor because before the surgery began, the doctor came into the waiting area to talk to us. His first sentence was "I heard that there is some question about bowel prep." He told us that it IS his procedure to order bowel prep but "he's not sure how it was overlooked this time." Imagine how this made us feel! We were both astonished and outraged. The doctor then said that bowel prep is absolutely crucial for colon surgery, but in cystectomy it is more of a "convenience" for the doctor. The colon is easier to move around if it is empty. He mentioned that he would normally cancel the surgery in a case like this, but he felt my father didn't want it to be cancelled. The doctor assured us that if he felt like this situation would compromise the surgery's outcome, he would cancel the surgery.
When we met with the stoma nurse the day before surgery, he said to Dad, "Well, I guess you are in the middle of your bowel prep." When we told him no bowel prep was ordered, he suggested there was an oversight and said we should call the doctor's office. Dad absolutely forbid me from doing that. He said the doctor knows what he is doing and if bowel prep was necessary, it would have been ordered. Besides, I think Dad knew that if a mistake had been made, it would cause a huge delay in having the operation done as he would have to be rescheduled at a later date.
I have to tell you, every bone in my body was screaming at me to ignore my father's wishes and call the doctor's office. Not making that call was the hardest thing I've ever done in my entire life. And, it turns out, I was right to be concerned. Guess someone at the doctor's office just "forgot" to order bowel prep. I think whomever is responsible should be fired!
Dad is currently in the Intensive Care unit. He is supposed to start walking today, but based on the way he looks and sounds, I can't see how that will happen. His blood pressure is giving them some trouble and he is having a hard time sleeping since the tube is in his nose and his mouth and throat are so dry that he wakes himself up choking. He does know us when we visit and has even made some jokes about his hospital care. I'm not sure when they will move him from Intensive Care to another room. I personally hope they keep him in ICU as long as it is needed as I think he needs that level of care.
He has already had a leak in his wafer and resulting wet bed. He is in the cardiac ICU since no beds were available in Surgical ICU. I hope the people where he is know to clean the skin and dry it thoroughly before applying a wafer after a leak.
I know in my heart that he will improve and get stronger each day. It's just difficult now to see him in his current condition. I keep telling myself that "this too shall pass." We haven't heard the pathology report yet, but the doctor said he feels sure he got it all and it didn't appear to have left the bladder and prostate. He didn't have to remove the penile urethra and the ureters has clean margins.
I have learned now to trust my instincts and listen to those with prior experience. I pray that not "going with my gut" this time hasn't compromised my father's result.
Harley...just talked with clur who has the external bag..ileal conduit....and she said that also in that procedure she had to drink the Go-Lytely the day before to clean out the bowel as they still take about 6 inches of the ileum to attach ..... I would certainly call the doctor and ask why this procedure is not being done. Pat
Harley Girl, I agree with Rosemary, it is so important to give your dad confidance in his final decision whatever that may be. Certainly many of us wish your dad could have a second opinioin from UTSW for his and your family's peace of mind as to the next course of action of a cystectomy being correct. If the patient, your dad, would have called and talk to UTSW I believe you would have had better response for an immediate appointment. Initially with my bladder cancer diagnosis from two private practise urologists, I felt it an emergency situaion to get into UTSW for opinions. The quickest appoinment given me was not for 2 months. I was nervous and called after a couple of weeks pouring my story out to a nurse. She told me "YOU KNOW YOU COULD ALWAYS GO TO THE EMERGENCY ROOM and they have to treat you there. I considered that but was able to learn enough about my cancer that I no longer considered a 2 month delay that threatening. BUT for others out there who feel they MUST get in fast at an institution to be checked, that EMERGENCY Room suggestion might be considered.
Maybe this Uro simply has a different protocol for prepping patients for surgery. At least you have someone who has been down the road with this Doc that you can talk with. I hope that this gives you a little more confidence in a postive outcome. Your attitude is going to be very important to your father in getting through this difficult time.
I don't see that there is much more that you can do at this point, except to be with your father. Believe me, just your presence and concern will be of great benefit to him.
Your Dad is probably going to be hypesesitive to the moods of the people around him for awhile. He will be looking to your attitude for clues about himself. Don't fake it, but try your best to give him the support that he urgently needs.
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
I finally convinced my Dad to call his urologist and ask that he order marking and education. It will be interesting to see if the doctor bothers to place the orders since it is so close to surgery day.
Dad went to the hospital this week to get all the paperwork out of the way. He wasn't given any bowel prep stuff to drink, nor any special instructions other than "nothing by mouth after midnight." Could it be that they will give him an enema before the surgery that morning? It's difficult for me to believe that his urologist could be so incompetent as to miss an important step like bowel prep if that step were absolutely critical to the outcome of the surgery. We talked to another man who this same urologist did the same surgery on, and he said he didn't have bowel prep and also just arrived for the surgery the morning of the procedure! So, obviously it has been done this way before.
The doctor's office at UT Southwestern never bothered to call me back even though the lady who answered the phone promised she would. It appears that the lack of communication and failure to keep promises is not limited to our current urologist.