Well, I'm certainly sorry to hear that others have had complications as well. I don't think my parents were well prepared that all these issues were a possibility! It is kind of nice to hear though that others who have been through this and had multiple complications are now on the mend...feeling better, gaining weight, etc! I can only hope that my dad is on the mend too, and that he can pull through all of this.
We are going to have a big meeting prior to his next discharge, which I imagine may be in the next few days, as he does appear to be doing better. I'm really glad that this was suggested to us, it will allow us to get all of his plans for care in place and I think this will ease everyone's minds!
I thank you all for your continued support and PM's and wish the best for a smooth recovery!! andrea
Lorrie and Andrea-
Although I posted prior to my husband, Harry's surgery, I hadn't been able to post during his hospital stay...but we are finally home. He too suffered several complications after the surgery, 10/1. Thankfully for us, these occurred prior to his release, but his total hospital stay was 4 weeks ("28 LONG DAYS" per Harry!) at Stanford Medical Center in the SF Bay area, 3 hours from our home. Thankfully, I was able to stay in the bay area during this time...although paying the credit card bill will not be fun! His complications were primarily caused by the very slow awakening of his bowels. I guess everyone's body is different, but Harry's bowel problems turned out to be the worst part of the surgery. After a couple false starts at eating (then to get sick) he was placed on a special PIC IV with a special nutritional drip which lasted 2 weeks, only able to eat ice chips. He had severe pain and after a CT scan, they found excess fluid in his abdomen, but no blockaage, so they re-inserted another drainage tube (the JP tube had already been removed). After the severe pain, he began taking more pain meds which we found out several days into it, would also cause the bowel to be sluggish. After we were told this, he stopped taking the pain meds (luckily he was able to handle the pain without it by then). This helped get his bowels working properly. Amidst all this, he also spiked a fever (caused by a uninary tract infection) with severe shaking which caused all his muscles to feel like jello, and hindered his walking a few days until they recovered. As I said, I guess everyone's body is different. Harry, who is 61, had never been in the hospital, was rarely sick with a cold and in excellant health prior to the BC diagonsis, but his bowels just didn't like being cut into I guess! As I said, we are thankfully home and he is recovering a little more each day. He too lost weight (about 15 lbs.) and muscle...but we'll be working on regaing that. We will keep you in prayer that Bob's difficulties will be over and that he will be home to stay soon. It is definitely not a "fun time" for patient or caregiver, but I try to remember what the alternative would be and am thankful each day that we had this option, however stressful it maybe.
Dear Lorrie and Andrea,
I have been following your posts for a while and you have been through quite a lot. It reminded me a lot about the problems my husband Hans and I went through last year. I am in Canada as well, Edmonton, and wanted to suggest to contact the Patient Care Ombudsman, but I see you have been in contact with them as well. We have been to quite a few screw ups during Hans's illness. I had problems with homecare as well, they didn't like to come every day and their goal was more to train you and the patient to care for themselves.
Regarding the concerns of weightloss, we were warned that with a RC there would be quite a lot of weightloss. My husband, Hans, lost about 38 lbs after a total of 5 weeks in hospital (complications). He had lost all his muscle mass. He didn't eat a lot and after a few weeks he still hadn't gained a lot of weight, so I changed to a high protein diet, which helped him gain some weight. I don't know if you are able to give him that.
As Patrica wrote, stool softeners are necessary and standard, because of the pain medication.
Hans used different ones, but the last one was Docusate Calcium 240 mg, which really helped.
My response is rather late, and you may have found out a lot of info by now, but don't hestitate to contact me since I went through quite a bit here in Edmonton.
It is very stressful to be a caregiver, and sometimes the developments are so quick that it is hard to keep up. Often you have to just go with your gut feeling, because this all so new for you.
I just went up to visit my dad as I got off work, and he looked slightly better and seemed in better spirits. He had an ultrasound today for abdominal pain, but we don't know the results yet. Monday is Rememberance Day in Canada so it is technically a holiday, so it might be hard to get details tomorrow.
Anyway, once again, I just wanted to thank everyone for the support, private messages etc. I feel like we are "taking" from this forum rather than "giving" at this point, but as dad starts to feel better, I hope we or at least he will be able share some of his experiences....and hopefully not scare everyone!! Thanks, andrea
I'm glad my mom has been able to vent a little on the site. This whole situation is getting ridiculous. Yesterday, after mom did some complaining, she was heard and some directer of PR called the ER and asked the charge nurse to talk to her. Mom had called me at work since she was very upset about things, so I came up and was able to join in this conversation.
She was actually quite lovely, and informed us of numerous services that my parents could possibly tap into. Physio, nutrition, mental health etc, as well as standard homecare. The problem was his doctor sent him home, basically they called mom to pick him up, no instructions etc. I made a bad assumption that these things were in place...I won't do that again! Anyway, I was also put as "primary" for discussing the case as I have a medical background, and we were told we could have a "family meeting" prior to discharge that could include all of the physicians, primary nurses, as well as the homecare, physio etc. and get a "plan" sorted out, rather than saying "ok, he's ready to go!!
I bought dad all the supplies he would need at my veterinary ICU, I was going to buy them at a medical supply, but they wanted $2.60 each for the syringes, whereas I got them for $.30 buying them from work. Ridiculous!!
A home care nurse also came into to see us as well, to discuss a "discharge plan" and what we really wanted from a nurse. I said even if dad didn't have any specific "treatments", if someone could just check on him daily and actually do a little physical exam. He can be very quiet about his condition because he doesn't want to worry. None of the talking that most of the couples dealing with this do on the forum, about bodily fluids and bowel movements etc...he keeps that to himself. If you ask if he's ok, it just "yep". I think that is where part of the trouble is lying, as he doesn't want to say anything, hides it, until something really gets bad.
Oh yeah, apparently his white blood cells are back up, he has a urinary tract infection, and probably if the constipation had not brought him to emerg, he would have been readmitted septic...deja vu of two weeks ago (to the day).
Oh boy! this has been a nightmare.
Anyway, I haven't had a chance to read the forum for a few days, and I'm off to work. Good luck to those of you facing surgery soon, and I hope everyone who is recovering is feeling well! andrea
Lorrie you need to speak to the social worker on the floor and inform them that you need a home health nurse considering his bedsore and all his other problems. Did they even prescribe a stool softener for you? Thats standard. I'm at a complete loss on the syringes.......thank god for your daughter. Help is out there ..you have to ask for it. What meds did they send home with you...the painkillers especially will cause constipation.......If they can't figure it out maybe we can.