My Husband and Cholangiocarcinoma – Part 2
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Thanks Marion! Once again the nurses who take care of Tom for his tube exchanges complimented me on the care that I do for Tom. They know that when he comes in there is not going to be any ‘gunk’ or skin breakdown under that bandage! He is their star patient. One told me yesterday that whatever I’m doing is working and that I should keep it up. They are just amazed that his skin under that bandage is as smooth as a baby’s butt, even after two years with a drain tube!
Byron – you’ll have to convince your daugher that ‘not all doc’s know whats best’ – case in point, one of Tom’s (former) docs told him that he would not live more than 6 months when he presented with his new tumor in Nov. ’09 – and here we are in Oct. ’11 and he is still here! He would have just listened to that doc and went home and probably would have died. But MOMMA (me) insisted on getting other opinoins cause I was positive that we could fight this cancer with the right options! My thoughts were to try radiation and chemo and that is exactly what we did, and proof positive, he is still here, AMAZING all of his doctors cause none of them were very positive that it ‘would’ work. And, the power of prayer and a positive attitude goes a long way too. Thinking outside the box also helps and mom’s are good at that.
Hugs to all.
Go with God and KEEP KICKIN’ THAT cancer!Margaret
Margaret,
Give Tom my best with the tube exchange. “Mother knows best”, is my motto. We keep trying to convince our daughter of that who insists the doctor is always right and her mom knows nothing about children. :0)
Keep the faith.
Margaret…We know that external tubing is prone to infection and your insistence of daily flushing is more than substantiated. You have the experience.
Good luck tomorrow
All my best wishes,
MarionRoutine tube exchange for Tom tomorrow morning. He’s been doing well, gaining a few pounds, some days eating is ‘iffy’ but he does drink the boost so that helps! No infection at all this month, so the daily flushing of the tube and the cleaning of the wound is the key. No more listening to the doctor who said “You can flush the tube every other day”…nope not listening to that cause that little screw up cost Tom 3 days in the hospital and 10 days of IV antibotics!
I know that everyone on this site will be thinking of him tomorrow morning, so I’m thanking you all in advance!
HUGS!!
Go with God and KEEP KICKIN’ THAT cancer.
Margaret
Margaret, CONGRATULATIONS, what a wonderful event to aim for! I will cross everything I own including my eyes in hopes for a girl. I have 5 Grandsons and 1 Princess! The 4 near me all have names from me…..My Hero, My Princess, My Treasure, My Sunshine. Yes, the feeling is undescribeable.
Lainy; You are right those grandkids are something nice! What a sweet way to honor and remember their Papa’s.
I can’t post this yet on my FB page cause I want my daughter Stacy to post it officially on her page first, but Tom and I are going to be grandparents again! I am so excited and am hoping for a girl this time. The last 6 have been boys so it’s about time Tom and I get a little girl to spoil….not that I mind spoiling those little boys, but I think it’s time for a little girl! Keep your fingers crossed for us!
And now Tom has something wonderful to look forward to, something to give him more incentive to fight harder. Baby will be here sometime in March if I calculated correctly.
I LOVE being a grandparent, they love you unconditionally. We had little Tommy this past Saturday and overnight till Sunday at noon, and all we heard all weekend was Ama, Ama and Papa, Papa. When his mom got here he wanted nothing to do with her and said “No, Ama!” I asked my daughter Brianne if that made her sad and she said “No, I think it’s wonderful that he loves you so much!” Poor little guy cried for Ama and reached out for me as they walked out the door. After she got him home and down for his nap, he work up twice crying for Ama! Gotta love that 2 year old, he just melts my heart and Papa’s too!
Go with God and all you grandparents out there, enjoy your grandkids!
Hugs,
MargaretMargaret that is so beautiful!!!!!! My Grandson who is 17 got a tattoo also and its a penguin as Teddy’s favorite animal was a penguin, he designed it and it is wearing a tucedo. Then tonight my Granddaughter who is at NAU sent pictures of her new bedroom off campus and I started to cry. There were at least 4 pictures of Teddy and me up in her room! These kids are something else, yes? This is what the circle of life is all about!!
Yesterday was my husband’s 2nd Grandaughter’s 18 birthday. I’ve known for some time now that his three oldest grandaughter’s all were planning a surprise for him. Kassie got a tat on her lower back with the Liver cancer ribbon with a sun behind it because Papa always called her Sunshine when she was little. And the words Hope, Faith and Fight.
The eldest grandaughter has a Petunia with the Liver Cancer Ribbon and is thinking about adding the word Strength. Papa nicknamed her Petunia when she was about 2 cause she always helped him plant the Petunia’s.
The youngest grandaughter has the Liver Cancer Ribbon with the word Hope, but the O in hope is actually a turtle shape cause Papa always called her turtle when she was little because she was so pokey!
Papa nearly cried when he saw them but did hold back the tears until we were in the car headed home. The three girls all planned it themselves and each worked out their own designs.
Gotta love those grandchildren.
Margaret
You got it, Margaret. I can’t think of anyone on this site coming close to your tube experience.
Hugs to Tom and you.
MarionLOL Marions, yes, I have become a tube expert. I’ve been dealing with a Tube of one kind or another since Tom had his surgery 3 1/2 years ago. He had two initially. One was a JP Drain, the other was the kind he has today. After 7 1/2 months they pulled the JP Drain and the other was pulled after 3 months. Then we had about 7 months with no tube until he turned Jaundiced and he’s had this tube ever since.
I can flush it, unbandage it, clean it and rebandage it all in less than 10 min, most times even less. It does not take long to do at all, it’s just another thing I do for the love of my life. I get scared when I hear of others who have an external tube and their doc’s don’t advise them to flush it every day. The wound gets all gunky with dried bile (which can cause infection) and if the tube is not flushed it can clog up very quickly cause bile gets sticky and dries up (kind of like a scab) I clean his wound with a q-tip with antiseptic on it, then wash the entire area with antiseptic, including the tube.
Feel free to send any questions on tube maintenance 101 to me!Hugs,
MargaretMargaret….new wheels and a new tube; Tom is ready to go. Margaret, are you aware of the fact that you have become a tube expert? Certainly I will refer to you anytime this subject comes up again. Wishing for nothing but the best coming your’s and Tom’s way.
Hugs
MarionHi Margaret, not glad that Tom lost his tail but glad he is tailed again! Yes let’s hope for a calm and quiet 4 weeks now, afterall he has to be in shape for his new wheels!
Tom had to go in for an ’emergency’ tube exchange today. Started noticing blood in the tube on Saturday. On Monday morning the entire bandage was soaked through with bile. I flushed it and cleaned it and got it all nice and pretty again. This morning I checked the bandage about 10 min before I had to leave for work (had to go into the office today) and sure enough soaked through again and this time I had 4 gauze pads on. He called the doc and they got him into surgery at 1pm. His daughter took him. The end of the tube is a ‘pig tail’ and apparently the end was no longer a pig tail, it had loosened up therefore causing the bleeding. And blood and bile don’t mix well rather it forms blood clots, therefore clogging the tube up. He’s all fixed up now and hopefully he can make it the full 4 weeks this time rather than two.
We are still KICKIN’ and TICKIN’ here in Wisconsin
Love and Hugs to everyone!
Margaret
Hi Margaret! Great news about Tom’s new wheels. Maybe you should get him a T – shirt that says, “Evil Knievel”! Way to go, Tom!
I don’t know who is more excited, me or Tom! We went to the VA on Friday afternoon as he got his ‘lesson’ in operating a scooter. He should have it within 3 weeks. AND they are sending out a company to install a ‘portable’ ramp for him so that he can get in/out of the house with the scooter. They may have to take off our front porch since the platform is not 5*6 which is what is needed for the scooter and to be able to get the door open. For every inch the door is off the ground you need a 1 ft ramp so we’ll have a 30 ft ramp. Not sure how long it will all take to come together but thank heavens his VA doc was so willing to get a scooter for him! Now instead of me pushing him in the manual wheelchair on our walks, he’ll be independent of me and can just ‘scoot’ along where ever he wants to. It’ll be great and the scooters do well on rough terrian like the lawn, etc.
I’m so very happy for him cause this will give him back a lot of his independence!
Go with God and KEEP KICKIN’ THAT cancer.
HUGS,
Margaret
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