pleasehelpmom
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Thank you for sharing your experience Pam, mothers and daughters have a very special bond. Mom and I were so close, our bond is forever strong…
Thank you Randi.
MK,
I am very appreciative of you sharing your experience with me. I never thought I was going to have to deal with losing mom at such a young age, I turned 34 in July.
I take it one day at a time. A couple of days before she passed, I cried a lot and was worried that I will never be okay. Days after I had lot to take care of including funeral/burial arrangements, when my day is occupied then I do “okay”. It’s the nights that are the worst, when it’s all quiet and I’m in bed tears just come out.
I started going through mom’s closet and found this little doll thing I made for her when I was about 13/14. Mom always brought that doll with her where ever she went, she said it brought her comfort and luck. The day she passed, I looked every where but could not find the doll, that was very upsetting. As I was going though one of mom’s purses today, it was right there in the zipped compartment. The doll will be buried with mom to keep her company.
Thank you everyone who have been so supportive through this difficult time. Mom and I were so close, I miss her so much.
Thank you Lainy, we put the hospital bed in the guest bedroom where there is also a big TV. There is also a nice size couch positioned parallel to her bed so I can lay next to her. We have a walker and oxygen will be ordered also.
Thanks Lainy and Marion.
Making mom comfortable is the number 1 priority now, we want to give this disease one last fight if for some miracle her bili comes down. Although I’m not naively optimistic.
We have a visiting nurse setup with mom, who comes in about twice a week to see how mom is doing and we are in constant contact with mom’s oncologist.
My aunt comes and stays with us a few days a week, this has been a tremendous help for mom and I both physically and mentally.
Blood test results from today’s doctor visit came back, I wish I had better news to report, but the bilirubin keeps rising. The oncologist will contact interventional radiologist to see if they can do anything else, maybe metal stents.
There is not a lot of drainage coming out of her new drain, it was measured about 80ml for yesterday and the bilirubin was 11 this morning. The doctors think it may be the tumor pressing against it too much. I’m having a little hard time to deal with this, since last time (about 3 weeks ago) her bilirubin dropped a lot 24 hour after the procedure. The recent scan done in the hospital shows growth in the tumor from July 10th scan but my understanding is not by much. The IR will come by today to check on the site, and I hope they can offer some explanation.
Thank you Lainy and Marion, you both are so nice, helpful and supportive! Mom has a little fluid in the lung and the ultra sound team came by earlier and said the pockets are too little for them to try and drain the liquid, they will talk to her primary team at the hospital to see if IR will be able to do anything. Will keep this thread updated with the progress.
Anne
Update from 08/06.
Mom became more yellow last Thursday/Friday and ran a fever of 102 on Friday night. I sent her to the ER to get treated. It turned out she has cholangitis again, this is the second occurrence in a month. Her Bilirubin level was at 9.5 when she was first admitted and after a few courses of IV antibiotics it came down to about 7.9. IR went in and checked her drain, they exchanged it to a bigger tube to help with the drainage, mom’s in recovery now. I’m guess we will be sent home some time tomorrow with IV antibiotics like last time. I’m hoping the new tube will drain better and we can keep the infections at bay.
Thanks for everyone who have been so supportive, it is so true about this roller coaster analogy.
Anne
