I'm back after very long and tiring week. As I mentioned in my last update, I decided to move some furniture and make free space for my bed so my mom and I could live in one room. It took me 3 days to do it, throw old stuff away and clean. My knee, back and lungs definitely didn't like that and I needed some time to recover.
PT girl came last Tuesday and put kinesio tapes on my mom's left leg. They came off completely literally 2 days later.
Nurse visited us on Thursday and today (Monday). Nothing new here - as always all she did was measuring blood pressure and saturation. She didn't even touch that "ulcer" on my mom's left food and just said to put thin layer of Sudocrem on it. More about it later.
On Friday we went to the hospital for scheduled nephrostomy tubes replacement. All appointments were delayed and we had to wait for like 4 hours but thankfully there was one gurney in waiting room so she didn't have to sit. This time nurses and docs were really helpful and understanding, they transferred her from a gurney to an operating table etc. I guess it's normal and expected behavior of medical staff abroad but here it's like wow, they really tried. Now, to the point - this time tubes replacement procedure was really hard and and took very long time. Doc couldn't put a new tube in left kidney, he tried over and over and it just wouldn't go in, so he did an ultrasound and it came out that there was a shitton of sludge in both kidneys and it blocked tubes from going smoothly in. Mom told me she heard gritty sound when doc attempted to insert a tube. Eventually doc was successful and new tube was in place. We were told that old tubes were fully covered in gritty sludge and almost completely blocked. I noticed there was less and less urine in bags in last 2 or 3 weeks, I think I even mentioned it here. Anyway, doc said my mom should have her tubes replaced every 4 weeks now to avoid blockage. Doc was in much hurry and didn't have time to give us papers, but I have a referral for next tubes replacement to show you. There's a date on it when it was written.
THIS PART IS VERY TMI, SO YOU CAN SKIP IF YOU WANT.
On Saturday our hospice doc visited us. We talked about flushing bladder and vagina and I openly said that IMO it's too risky at this point and I can't agree for this procedure to be done at home where there's no access for an ultrasound, nothing is sterile etc. Vaginal discharge is very nasty tho, smells awfully and is heavily mixed with blood. Labia majora are swollen (we can't be sure why - it may be caused by infection in that area or by lymphedema), labia minora are inflamed and red, same with anus. Small amounts of liquidish stool is coming out involuntarily 24/7. There's nothing that can be done with the stool problem atm, because tissues and nerves of rectum are heavily damaged by growing tumor pressing on it (it may also be a late side effect of RTH) and taking anti diarrhea meds may lead to very heavy constipation. Doc told me to smear aqueous solution of silver nitrate around labia and anus (without internal flushing), use Argosulfan cream here and there, use vaginal globules - Macmiror Complex 500 (nifuratel + nystatin) in the morning and Clotrimazol GSK (clotrimazole) in the evening. I was told to not use diapers and underwear if possible. Tbh my mom stopped using pads and wearing underwear some time ago and now we just use Seni bed underpads. I clean my mom very often, at least 3 times a day to keep her fresh and avoid any further inflammation and skin irritation. This is raw reality of taking care of bedridden person. In the past I wondered how caregivers can clean someone else's private areas without any disgust. Now I understand and to be very honest I'm not disgusted at all. You gotta do what you gotta do.
No changes in my mom's leg. Doc said it'll probably stay that way, because my mom's ability to move is worsening every day. PT (exercises) isn't an option rn because of thrombosis. She's not even allowed to wear stockings used to decrease swelling... Doc said there's no sense in continuing kinesio-taping...
That ulcer on her foot isn't pressure sore in doc's opinion. It looks like typical blister full of transparent fluid. It doesn't seem infected and isn't painful. We were told to let it be for now and if it breaks, I'm supposed to use Octenisept on it and some light dressing.
Other pressure sores are ok, they're still there but they continue to heal.
Mom has nausea from time to time, doc prescribed Atossa (ondansetron, known worldwide as Zofran).
Pain management didn't change since last doc's visit.
Yesterday we talked about dying process, hospice and funeral. I'll have to pay for a new burial plot, because it won't be possible to bury my mom in the same grave where her mother (my grandmother) is resting. It's not registered as "family grave" and cement wasn't used to strengthen pit's walls. Basically it's kind of "one use only" grave. My mom wants to be buried in the same cemetery where her mother is. It's the communal cemetery, here's its website http://www.cmentarzekomunalne.com.pl/cmentarz-polnocny/cmentarz-polnocny-informacje/ She isn't sure yet if she wants a mass or anointing of the sick. I will inform you when and where funeral will be, as my mom said everyone who helped us is free to come if you're able and willing to.
Now I want to rant a bit about our neighbor. I have to let it out or I'll explode. On Friday when we were leaving to the hospital and paramedics were transferring my mom on a gurney from our apartment to the ambulance, I met our neighbor. When that b... saw my mom she said to me "hey, she (my mom) completely dried out!". She said it THREE TIMES. How much audacity does one have to have to say something like this?? I thought I was gonna punch her but I only wished her to not "dry out" like this herself. Unfortunately my mom heard it and asked me to put T-shirts on her instead of tank tops, because she doesn't want anyone to see her thin arms. Why do people consciously and willingly hurt terminally ill patients and openly compare them to mummies. That neighbor didn't gain anything from it and my mom felt awful after all. :(
That's all for today. Thank you for your support!
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