jennifers
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Hi Donna,
I just want you to know that I am sorry for what you are going through – what a tough time it must be for you and your family. Just know that there are many people thinking of you and praying for you and Jim. I hope they are able to keep Jim as comfortable and possible and he is able to check a few more things off his “to do” list! Please take care of yourself too! Keep us posted!Jen
Hi Kristin,
Dad had some leakage around the drain a couple of times, but it was never too much, and always stopped. Be sure to keep it very clean to keep it from getting infected, and like Lainy said, maybe give another call in to the doctor to ask about it. I’m sorry it didn’t go perfectly, but maybe this is just something small and is common? Hopefully once you get the internal drain put in you will have some relief!
Good luck – keep us posted! Thinking about you!
Jen
I can’t help you with your question, but want you to know that you and Jim will be in my prayers tonight – thinking of you both, and hoping you can get things figured out quickly. Good luck.
Jen
Dad is actually still in the hospital right now – they want to keep him until his bili levels start dropping (it was at just over 230 this morning – seems insanely high to me, but what do I know)! He’s still in a lot of pain, but can get stuff for it when he needs… I know they gave him morphine at some point today, so that should certainly help!
He’ll hopefully be home on the weekend, and I imagine by then his regular pains meds should be able to keep the discomfort he is bound to feel for a while under control. He ate a bit today, and I’m sure as he starts feeling better his appetite will continue to increase…
Thanks for all the comments – it’s been a rough week for us!
Jen
You’ll both be in my prayers tonight Margaret – I hope it goes well on Saturday, that his bili levels remain under control, and that the physio helps. I’m sure that garden of yours looks absolutely beautiful… ask if he wants to visit Calgary and do my yard next
Jen
I’m sorry you had to look for this site to begin with, but so very happy for the good results your husband has gotten. Good for you both for going in prepared with all the information you did.
One thing I will mention that I have heard other people say and believe quite strongly is having chemo after surgery, regardless of whether doctors feel it is required or not…. I believe many see it as one more way to ensure they get it all, since this is such a tricky cancer. Just something to think about and consider… others may have more information and comments about that!
I hope things continue to go so well for you and your husband!
Jen
How long does the pain last for those of you who have had an internal stent put in? He was sure in agony today. I know it’s not a “small” procedure and of course having a metal stent inserted into your body isn’t going to feel great, just wondering when he’ll feel like moving around a bit and eating, etc.
Also – I’m assuming the external drain should really never have much bile in it since he now has a stent? Is it just for the “extra” bile going through his system? Just wondering how all that really works since we haven’t had any experience with it. We’re used to knowing how the drain is working based on the amount of bile, but now I guess it will be based more on blood work and whether he is jaundice or not feeling well then anything else…. I think?
Thanks so much everyone!
Well, Dad is out and doing okay. He actually got an external drain AND a stent – we have no experience with a stent, so hope that it works for him as well as it has for others!
Kristin – All my well wishes and positive thoughts will be with you on Friday – thank you for all your comments and support the last few days, it’s been a big help for me. I will certainly be thinking of you during your own replacement!
Janet – I actually tend to agree with you – I believe persistance in the key in many instances – complaints included! I think they would have gotten very defensive with us had we attacked them, but luckily it didn’t come to us having to worry about it since he went in today.
Next challenge is to get that bili level WAY down (we imagine it is well over 200 now, but not sure since they haven’t checked in since it was 158 last week). We have our first ever family vacation (parents, myself, my sister and brother) planned to Newfoundland (where Dad was born) in 3 weeks, and sure hope he’s feeling up to it! It will be an amazing and literally a once in a lifetime trip that we are all looking forward to.
Jen
Finally some good news! Dad went in for the procedure around noon today (it’s now 3:00pm here). I haven’t heard how it went, but I’m sure I will soon. I sure hope all went well and this helps him feel better. I’m thrilled that he’ll be allowed to eat what he wants when he wants now…. hopefully he can gain a few of the lost pounds back. I’m a bit nervous that we’ll get bad news about the cause of all these problems, but trying my best to remain positive!
Cute happy story for you all though – I have an 8 month old daughter (also Mom and Dad’s first grandchild, but soon to not be the only one as my sister is expecting)!! Anyway, yesterday she was getting into stuff so I sat next to her to tell her no and put it back. She furrowed her brow at me like she was annoyed, took the soother out of her mouth and shoved it directly and perfectly into mine in the middle of me telling her no…. my baby told me to shut up with her soother!! I haven’t laughed like that in ages. She’s so bold… I am in serious trouble when she’s able to use her words and not just her soother
She has helped us all smile in the face of such adversity over the last few months… babies are such a blessing!!I will let you all know how Dad is doing once I get news. Thank you all for the support – not sure what I would do without this site!
Jen
Dad didn’t have his procedure. Not only did he not get it, but they didn’t bother telling him he wasn’t having it until my sister went to the nurses station about it at 5:00 tonight. We are beyond furious and Mom will be talking to HIS oncologist first thing in the morning (not whoever has been coming to see him once a day) and MAKING SURE he starts to get care the needs and deserves.
This is absolutely terrible – he has had amazing care every time he’s been in until now – this time, he is lost in the shuffle as he is on a unit with people that really are sicker then him. They are practically starving him to death. You don’t make a man that weighed MAYBE 130 pounds when he was admitted not eat a thing for 3 days waiting for a procedure. He has VERY obviously lost a consider amount of weight (is nothing but skin and bones), and they’ve even given him so little fluids through IV that it’s another thing that had to be mentioned to have increased. A child couldn’t survive on what they were giving him before something was said. His drain has completely stopped since he’s not eating, and when he finally IS allowed, whatever he eats goes right through the thing. I am so sad, so sick, and so discusted with the lack of care he has received. He was much better off at home as an out-patient. At least at home he was eating. This WILL NOT go on for another day. Will update tomorrow.
Hi Everyone,
Glad to know I’m not the only one that wasn’t impressed with him losing his room! The problem is, the only bed they had at the time he was admitted was on a unit full of people that are in dire need of kidney transplants and really are very very sick. They have a room for him now, so he will be much more comfortable. Insurance doesn’t handle anything at all for patients in the hospital here. Alberta Health Care covers any care required for anyone requiring it, including hospital stays and any medications required when in the hospital. I guess since it’s free for us, they assume they can do as they wish? I guess there are problems with all Health Care Systems, and lack of beds is certainly a huge problem here.
Mom just called and told me that he still hasn’t gone in for the procedure, but are still saying that it will be done today. He’s “on the schedule” so hopefully this is true. If it doesn’t, I’m sure Dad will finally be angry enough to voice his concerns, and if not, I know Mom will. I’m not sure if they have spoken with the oncologist today, but I’m sure once they see his levels are how he is feeling and looking, they will be pushing for quicker action.
Thank you all for your comments and feed back – believe me, should anything else happen we will be pushing back… will keep you all updated!!Jen
Still no news – they were supposed to do the procedure yesterday, so he had to stop eating and drinking Sunday evening… well, they come back at 4:00pm yesterday and tell us it won’t be done. Dad was STARVING! Then they ask him if they can give his bed to a patient who was really sick (since Dad is considered stable), which Dad of course didn’t mind, but now he’s basically in the hallway on a stretcher. He may not mind, but I do!
They made him stop eating very early this morning and say that the procedure will most certainly be done today… it better. He looks just awful – I have NEVER seen anyone so yellow in my life… I’m pretty sure his eyes glow in the dark when the lights are out! He’s also nothing but skin and bones. He bili level was pretty rapidly rising last week and it was at 153 or so on Thursday or Friday… I can’t even imagine what it’s at now. I can’t believe all the side effects of the bili – the new drain will hopefully make him feel a lot better. I guess it’s just a waiting game again today…
Will keep everyone posted.Hi Lainy,
It sounds like the radiologists don’t do this type of procedure on the weekend which is what the holdup is. It’s ridiculous, but it’s actually the reason his oncologist decided to get him into the hospital – it will actually be looked at and dealt with quicker if he’s an in-patient and taking up a bed that someone else could be in. He should get all his blood work done today and we are REALLY hoping he sees the radiologist tomorrow…. I guess we’ll see. Hopefully he will also been seen by a doctor today that will give him something a bit stronger for his pain.Thank you for the thoughts and prayers – it’s very much appreciated right now!! Will keep everyone updated!
Jen
He’s not doing great – they still don’t plan to do anything until tomorrow or the next day, but his bili levels are raising daily. I know it was in the 150’s 2 days ago and they will probably check it again today. He is more yellow now then at diagnosis, getting confused about little things (which is tough for me to see), and he isn’t feeling well at all… he said that he can’t explain what hurts or why he isn’t feeling right, but that there is something not right. Percocet doesn’t seem to be helping him with pain management, and it always has in the past.
We are all really hoping getting the drain looked at will help give him some relief, because it’s not nice seeing him so uncomfortable. Thank you for asking Kristin, I will keep you updated.
Jen
