mymommylife
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asunrae, I’m so sorry for your loss. I can’t imagine the grief that the loss of a child brings. You and your family are in my prayers.
My mom sees Dr. Javle at MD Anderson in Houston. He’s kind, compassionate and very knowledgeable and we’ve never felt like we are being rushed.
Sorry about your husband and I will pray for you and your family so you can get through this. God bless and take care
I would def get a second opinion, if this is the kind of treatment they are giving you now I don’t want to even imagine what it would be like if God forbid things get worse. This disease is a rolllercoaster, hang in there. You will get a lot of support here, what questions to ask and experiences.
Hugs!!!
Sandie,
Hang in there, thanks for sharing your good news, +ve news always gives me hope for my wonderful mother.
Thanks Eli, for the last two months I’ve been ordering stuff from amazon. Thank God her leakage is under control now, it was insane changing her dressing every two hours, poor thing her skin is going to take time to heal. Me and my family used to live in Aurora, ON two years ago… Beautiful county with beautiful helpful people.
Lainy, what’s the name of the gel? Mom got her tubes up sized again two days ago, praise the Lord the leakage is minimal, we got some bad news the latest ct shows that her cancer might have grown or it may be swelling from radiation. Dr. Javle is not sure. They want to check her bilirurbin # again in two weeks. I’m praying that it goes down and they an start some sort of treatment.
Another frustrating issue is the supplies, gauze and tape is way too expensive, some of the nurses were kind enough to give us paper tape, she’s allergic to all other kinds. My parents don’t work and my brother is helping out with the insurance payments. Any advice as to where we an get supplies at cost price?
Sending prayers your way, please try to hang in there..waiting is the worst part. Hoping and praying it’s nothing serious.
Hugs!!!!
Let me tell you first hand it’s a struggle, nuisance, pest to deal with the bags. My mom has two and the right one causes her too much grief since it goes in through her rib and probably pitches a nerve causing her to pop a hydrocodone every 4 hours. We are in the midst of seeing f the internal radiologist can go to the right side via the left and are waiting for that appt.
As for clothing she rarely goes out, only for her appts. When she is home she has them tucked in her pajamas, and when she goes out she uses a belt to tie it around her hips and wears long tunic tops.
Her internal stents were taken out since they were useless end of April. Make sure they get changed on time, they usually say every three months. Mom has had them since Feb, changed about 6 to 7 times due to infection/ leakage……tubes need to be flushed and changed daily. I am changing her right dressings every two hours since it’s leaking to the skin.
I’m not trying to scare you, but keep an eye on her. Mom has had a hard time with them, I’ve moved back home to help her, she’s only 60 but this disease has aged her so much. We have had them change the tubes, upsize them but the right side won’t stop leaking; mind you they are open to a bag and not capped.
Feel free to ask me any questions.
Hugs!!!
John, thank you so much for sharing, my day started off bad but you just fixed it. Thanks again, and best of luck for a bright healthy future.
My mom is seeing Dr. Javle at MD Anderson, so far him and his staff have been very helpful and informative. Good luck with everything!!
