Well, it is almost 1 week post op (surgery was last Wednesday) and Dad is doing well. He got the NG tube removed yesterday and what a difference that made! The next hurdle is getting the central line out of his neck, which might happen tomorrow as they "wean" him off the TPN. Every time the urologist/surgeon comes in to see Dad, he just grins from ear to ear. He can't believe how well Dad has done.
We walked quite a ways several times yesterday and today he was pushing the IV pole and walking by himself (with my brother close by!) Last night was a bad night as he had severe back pain in the area behind where the stoma is located. He didn't use any morphine all day yesterday, but when the back pain hit, he hit the morphine button with not much relief.
I asked the urologist/surgeon about the pain today and he told us that he had used the rectus abdominas to support the stoma so he wouldn't get a hernia, so that could well be the muscle pain he is feeling, especially since he has been moving around so much.
The stoma nurse came in yesterday while I went home for a few hours, and my brother reports that Dad did the whole appliance change by himself while looking in the mirror and standing up unsupported! The surgeon didn't put the stoma where the stoma nurse marked it and it appears to be a little low. We determined the leak he had early on was caused by dimples in his abdomen area that we didn't even notice. An Eakin seal was applied and it seems to work great.
Today is a clear liquids day and I've never seen a man so ecstatic about jello and chicken broth for breakfast! So far, so good. Nothing has come back up. He even sent me to the Nutrition Room on our floor at the hospital for extra juice and popsicle!
The unit Dad is in at the hospital is grossly understaffed. There are 28 rooms and only 5 nurses in an area that is just one step below intensive care. Each tech assigned to a nurse has 10 patients to cover. That's not acceptable. Most are nice and tolerate my questions, some are not so nice. We have a family member there with Dad at all times, with my brother taking days and I stay overnight. I'm glad to be there as I can do things like get a blanket and get ice chips, etc. so he doesn't have to wait for a nurse to come see what he wants. Response time is not real quick. When the machines on the IV pole beep, nobody knows until (a.) they walk down the hall near your room and hear the alarm or (b.) I go tell them at the nurse's station. Usually it's the latter.
Dad is now brushing his teeth, washing up and shampooing his hair with those wonderful shampoo caps each day. He shaves with an electric shaver and feels like a new man. I know recovery will be slow and sometimes painful, but I just thank God that he is still here to recover.
I have documented ever step of the way in a journal including all vital signs, what each doctor says about recovery, Dad's daily condition and activities, etc. One of the nurses I really like told me today that the intravenous food (TPN) that Dad is receiving costs $3000 per bag and Dad has had 2 per day since last Thursday! Yikes! Thank God for insurance. Hope they will pay for all this.
Thanks again, everyone, for your advice, thoughts and prayers.
PS: I never thought I would be so incredibly happy to hear someone pass gas and have a rumbling tummy! It was music to my ears as it moved Dad closer to getting rid of the NG tube.
The doctor doesn't want the stoma nurses to mess with what he's done?????????????????Well thats a first! And if there was no invasion in his bladder why was a cystectomy done? A simple PSA test would have confirmed elevations and possible Prostate cancer so why was that a mystery to the doctor?
The NG tube is the worst...felt like i had razor blades down my nose......but i was not allowed anything by mouth until i had bowel sounds and movement. I was fed intravenously.
I wish your father the best and hope he can overcome what i consider to be a very negligent doctor. Keep a diary of everything. And i realize that if you have no medical power of attorney there's nothing you can do but i'd enlist the help of your mother on this.
My interpretation of this scenario is pretty postive. I don't think that your Dad would look that great if his red blood count is down. I do wonder what is causing this and also what is causing the fever. :-?
However, it sounds like the Doctor is thinking that this will work itself out.
Most of all, I am glad that you and the Doctor are communicating about what is in the best interests of your father.
Here's wishing that each day will show the improvement that you hope to see.
Thanks for keeping us posted.
Age - 55
T1 G3 - Tumor free 2 yrs 3 months
Dx January 2006
Dad was moved out of ICU last night to a unit called Progressive Care. He sat in the chair both days after surgery (so far) and he walked really far yesterday by holding on to the handles of a wheelchair. He's still hooked up to so many tubes and wires that moving is a production. The nurse in ICU who helped him walk told me that he would be surprised and pleased if Dad made it to the nursing desk right outside his room. Instead, he walked around the entire unit! I think he overdid it as he was pretty pooped afterwards and then had to load up and move to another floor.
The main problem he is having is not being able to sleep due to dry mouth and throat. He still has the NG tube (and probably will for a few days more). The doctor let him have a few ice chips yesterday, but he became nauseated and got a headache.
The doctor called the ICU unit yesterday and asked to speak to me. He said he felt my Dad was "doing great". He also informed me that the pathology found that the cancer had NOT invaded the bladder muscle, but that he also had prostate cancer. No doctor we went to (and all did biopsies) ever diagnosed prostate cancer. The doc said the prostate cancer had invaded the muscle wall and he's not sure if it got out of the prostate or not. He said prostate cancer is slow growing so since Dad is 80 it's not too much of a concern. He also said his white count is high and red count is low but they are monitoring it. If the red count drops lower, he will have to have a transfusion. His top number on his blood pressure keeps getting high, but the doctor said it's better to be high than low. He has also run a low grade fever.
He is wearing the sequential leg compression thingees and has his morphine button at hand. I think things will drastically improve when the NG tube is removed and he can have some liquids.
I asked the doctor yesterday when he will see a stoma nurse. He made some comment like "there's plenty of time for that. I don't want them messing with what I've done." I got the impression that he was not a fan of the ET department. I don't know if when they changed his wafer after a leak if they cleaned and prepped and dried the skin. He's hooked to a bigger night bag, of course that is hung to the bottom of the bed rail. The urine output is really dark and the ICU nurse told me there could be some residual operative blood.
The doctor seems to be pleased about the whole result, but he did tell us that we are "far from out of the woods." He said there are lots of things that could still go wrong. Not what we wanted to hear! My Dad is not looking that good to me, even though he is responsive. I guess time will tell.
Glad to hear your father is out of surgery and recovering. What a drag, that bowel prep stuff. Good thing it wasn't me there, in your shoes or I would have had a hard time. I have a friend who had abdominal surgery, and the surgeon accidentally sliced her intestines, which had not been emptied first and boy did she get ill. Hearing that your father had adhesions to boot, I can only imagine that your father was very lucky nothing bad happened. The surgeon took a risk, as well. But all is ok and for that I'm very glad.
Kim having taken care of my 82 yr old father who still regarded me as a l2 yr old i understand your timidity in going around your fathers stubborn wishes. I'm glad you finally did say something but your father made the final decision and if he compromised his recovery it was his doing not yours. They do have to take 6 inches of the ileum..small intestine for this surgery so its imperitive that they do the cleaning out with the Golytely. I've never heard that explanation before about the bowel being easier to move. At least you have grounds for malpractice should any complications arise not that thats any comfort.
Its difficult enough for younger people to go thru this grueling surgery. There isn't anything that doesn't hurt afterwards but they do make you get up and walk regardless..he should also have cuffs on his legs to keep circulation moving to lessen probability of blood clots forming. He needs to move whether he feels like it or not. The first 2 days are the roughest....it gets better...but its a slow process. Even tho he's in the cardiac intensive care he should be seeing a stoma nurse at the very least once a day. If he's not go to the Nursing Supervisor or the hospital omsbudsman.
Don't beat yourself up....you tried to do whats best and hopefully it will be a favorable outcome. Keep watching over him and don't ever be hesitant to be his advocate no matter how he grouses or the nurses complain. If you have any questions believe me everyone on this site knows pretty much what they're talking about and if we don't Wendy will make sure we do. Pat