highsmith
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Libeco,
As far as redness, my dad had two external drains and a feeding tube line for months and there are times they do look a little more angry and red than others. It seemed to me if they get tugged at or clothing irritates the opening the wound looked angry. They sell special 4×4 that are cut specifically for being over drain lines. I changed them once or twice a day, depending on what they looked like. Alcohol wipes and a wound cleaner (if they Dr. allows) also seemed to keep things moving. If you notice a smell or change in color of the area, I would call the Doctor. If you don’t like the nurse, ask for a new one. Unless your parents live in the middle of nowhere, there is another nurse out there. Find one that you trust, as she may well become a daily visitor.
Like Lainy said, chemo at too low of a level seems pointless. It can still cause side effects and likely has absolutely no value. Some people get spot radiation if it spreads to the bones. I think there is some value there, as the most likely side effect of that is fatigue.
As far as nutrition, I would let your dad lead the way. Fix favorites, enjoy what he can and put your worries aside. If Boost or Ensure or a banana shake seems to give an energy boost, great!
If your dad is not ready for hospice, a palliative care specialist may be willing to coordinate pain control and any treatment you seek. My dad is not ready for hospice, but sometimes managing nurses and appts. and continuing care is overwhelming.
Stacey
Thanks Marion!
I know some of it is the protocol is not set in stone and they are trying to be extremely sensitive to my dad’s anemia and blood infections. I have faith and trust in all of our team! I just wish they would pull the trigger and decide!!!
I think we have covered three different chemo combos and four radiation combinations, so I am not sure there are many choices left!
Cathy-Too tired to shop?!?!! Say it ain’t so!
I think my dad will try this. He has had three wound vacs, so the last thing he wants it another “friend” to carry around but it sounds like the best option. We briefly discussed trying the pill form of 5-FU , but it doesn’t seem the right fit.
I figured the radiation was in/out, probably longer to get to/from the car!We are waiting on a return call from the Oncologist to see what the timeline looks like. My dad has been on antibiotics for three weeks, with one more week to go. Looks like they will finish that and then put in the port.
Acuevas,
Welcome to our little family. My dad’s first stint in the hospital was 44 days. It is amazing what the body can pull through. Hang in there!!!
All the best,
Stacey
Lainy-
I am so glad he is looking after you. It must be so comforting to know his spirit is looking in on you already.
Stacey
Oh Lainy,
I would be utterly annoyed over the Tylenol. With my dad, we already give him whatever he needs to be comfortable. I cannot believe an inpatient hospice is concerned over acetaminophen. I hope you get them straightened out quickly and Teddy is comfortable.
Stacey
Oh Lainy, I am so sorry, but know you are making the right decision for everyone. My grandfather had a kick-ass hospice in South Florida. We arrived his second day there and it was nicer than our very nice hotel! I was so impressed with their every move.
Love, prayers and peace,
Stacey
Thanks Gavin and Lainy.
I am just surprised that they were willing to do chemo three weeks ago but he has not had any additional infections since then…as he was in the hospital when they said they wanted to start chemo as soon as that blood infection was clear.
I was fine with no tx this summer when there was no tumor growth. We are very lucky his bilirubin is completely within range at this time. Unfortunately, his tumor marker keeps jumping with the size of the tumor.
I know there are no easy answers and the easy ones seem to come with complications. I think I am just overwhelmed these days, as nothing seems to be moving forward.
Thanks!
Lainy-
My dad had crazy nightmares when he woke up from a coma… They gave him Haldol and it did little, so they gave him a much larger dose, which caused him to sleep for two days. Can they up the Haldol slightly?
The dreams, rather what my dad thought was reality ,was worse than when he was just peacefully in a coma. I took it really hard. My dad thought people were out to kill my sister and I, so he would wake up and freak out and want us to leave the room.
I hope something works.
Stacey
Shazza61-I hope the Abrazane helps! It is so hard when you seem to conquer one thing and another rears its ugly head.
Wildcat-We are patients are Barnes. Dr. Chapman and Crippin are the best of the best when it comes to transplant. Unfortunately, my dad does not qualify for one, but I would do everything I could to convince your mom to at least see them for a consult. If they can do a transplant, she could be in a whole different world in a few weeks!!!
Good luck!!
Stacey
Damamma-
Most of these cancers are adenocarcinoma, so that doesn’t change, but the presence of cancer cells does seem disconcerting. Is it the lymph nodes are enlarged or the CA19-9 marker? I am not as well versed as many, so I may be missing something…I agree that it is summarily great news that there is no metastatic cancer, but it does seem confusing, in the end.
Stacey
Aunt Jen,
Congrats!!! I am so glad the baby is fine. I hope everything works out as it should. I am so glad the pain is controlled and hope surgeryis in the works if need be.
We are very lucky my dad survived all his post-Whipple complications, but my sister gave birth one floor above my dad, who was in CICU. The nurses were so sweet. Oliver was only eight days early, so no worries there. We could not chance bringing Oliver into the CICU, so as soon as my dad was stable enough to be transferred onto a gurney, it took two nurses and three transport people, but we got him onto a gurney and all his lines and drains and got him into the hall to meet Oliver. We even piled several blankets into his lap in order to be able to swaddle Oliver for a few minutes. It was priceless!!!
Stacey
My dad has had the same left lobe issue for nine months and his oncologist always was pleased that it remained the same and did not progress. His liver function was within normal range, even with the atrophy and dilation. Unfortunately, he has a new tumor in his right lobe, so it has changed things for us.
I would take it as a positive and keep on, keeping on…and the fact the oncologist is comfortable with not seeing her for almost a month seems like a good sign to me. When our oncologist didn’t like something on a scan, we were there within a day or two, even if it meant waiting for hours to get worked in.
Stacey
