Grrr...if it weren't giving him nutrition...I would cut that darn feeding tube!!!!!!!

GRRRR....darn feeding tube clogged again...
More coke, nothing...
Another night without nutrition and a loss of another 3 lbs...
A trip to the ER this morning...

And a HUGE THANKS to Nurse Scott!!! who was able to unclog Brendon's feeding tube... WITHOUT us having to be at the hospital more than 30 minutes!!!! YEA!

So, Brendon is officially over 50% done with radiation!!! Another YEA! Small side note though...he seems to throw up almost everytime he tries to eat. He is taking a nausea pill about 20-30 min before eating, but it just hasn't seemed to be working. Brendon said the burning sensation is horrible lately and even just takin' small sips of water is difficult. I get frustrated when I see him lose weight even though inside, I know he is really trying.

Tomorrow will be 13 years since my dad died of cancer...and boy...my emotions are running crazy. We are going to try to go to Baskin Robbins tomorrow .... since it was dad's favorite ice-cream place - and I really hope that Brendon will be able to enjoy it. I don't want him getting sick. :-( I hate that.. just having to be by his side and not be able to do a darn thing for him... not be able to make the esophagus not burn...

Really not much new to update....Emailed Dr. Luketich with a few more questions on Thursday but still haven't heard back from him. Keeping my fingers crossed we get a reply by Monday.

I hope everyone is enjoying their weekend.. I didn't have much to say really today...but Brendon is sleeping...and it's raining outside....so I thought I would just vent about that darn feeding tube!!! And who else to b^tch about it too, but to all of you!!! :-)

Thanks for listening!!! :-)
Susie

Comments

  • sandy1943
    sandy1943 Member Posts: 824
    Susie, I was very fortunate
    Susie, I was very fortunate I didn't have a feeding tube except in the hospital. When it clogged there, they did the coke thing ,and it worked.

    I'm praying for you. I haven't been the one to watch a love one fight cancer, but I know how difficult it has to be.

    I hope Brendon can enjoy his time at Baskin Robin's tomorrow. Maybe ice cream is just what he needs.

    Vent anytime you need to . Someone is always here willing to let you, because we do care. We've all been there as the survivor or caregiver, so we do understand the roller coaster of emotions.

    I am praying for You and Brendon,
    Sandra
  • Bobs1wife
    Bobs1wife Member Posts: 150
    Susie,Feeding tube story to make you smile!
    Susie, My husband had a feeding tube and it would clog. Thankfully we always seemed to get it unclogged just as I was saying we were going to the hospital and let them take care of it!

    Our issue was with it getting stuck shut and not being able to get the lid open. He flushed it, he cleaned it, he put vaseline on it, did about everything you could think of and still couldn't get the thing open. It was like it was glued shut. Finally my husband kept a pair of vise grips by the bed to get it open!! I found it kind of scary, but it worked! Linda
  • petals007
    petals007 Member Posts: 23
    @ Susie: have you tried
    @ Susie: have you tried blending / pureeing his food? that way he can just sip it from time to time instead of trying to take in a normal sized meal.


    that helped for me anyway. I would take a pain killer for the burning sensation caused by the radiation and then just sip some food every 10 ~ 15 minutes to make sure I wouldn't throw up.
  • dwhite0002
    dwhite0002 Member Posts: 126
    Suzie,
    I take Carnation

    Suzie,

    I take Carnation Instant Breakfast VHC (very high calorie) through my j-tube. It is 560 calories per can. The highest stuff I have found.

    Check it out...

    -David
  • dwhite0002
    dwhite0002 Member Posts: 126
    Suzie,
    I take Carnation

    Suzie,

    I take Carnation Instant Breakfast VHC (very high calorie) through my j-tube. It is 560 calories per can. The highest stuff I have found.

    Check it out...

    -David
  • J tube issues
    Hi Susie,

    Me too love Basking Robbins. I can eat half of cup! wonderful.

    Only one time I had the scary clog issue. I tried coke soda and WALA!To preven it I always flushed my feeding tube with warm water 60cc every two hours during my feedings. Also, when I had to take medicine, I dissolve it with warm water 30cc and 60cc to flush it. Hahaha I believe I had the cleanest feeding tube. You can put in it all the water you want since it is just water. Feeding tube is a life saver. Feeding tube helped me to maintain my weight after surgery.

    Keep the good work!

    Yovana
  • J tube issues
    Hi Susie,

    Me too love Basking Robbins. I can eat half of cup! wonderful.

    Only one time I had the scary clog issue. I tried coke soda and WALA!To preven it I always flushed my feeding tube with warm water 60cc every two hours during my feedings. Also, when I had to take medicine, I dissolve it with warm water 30cc and 60cc to flush it. Hahaha I believe I had the cleanest feeding tube. You can put in it all the water you want since it is just water. Feeding tube is a life saver. Feeding tube helped me to maintain my weight after surgery.

    Keep the good work!

    Yovana
  • Susie_Brendon
    Susie_Brendon Member Posts: 128
    Bobs1wife said:

    Susie,Feeding tube story to make you smile!
    Susie, My husband had a feeding tube and it would clog. Thankfully we always seemed to get it unclogged just as I was saying we were going to the hospital and let them take care of it!

    Our issue was with it getting stuck shut and not being able to get the lid open. He flushed it, he cleaned it, he put vaseline on it, did about everything you could think of and still couldn't get the thing open. It was like it was glued shut. Finally my husband kept a pair of vise grips by the bed to get it open!! I found it kind of scary, but it worked! Linda

    You were correct...You made me smile!
    ...so vise grips huh?!?! Yes, you definetly made me smile...actually I laughed!!
    THANKS SO MUCH!!!!!!!!!
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    Thanks for Update!
    Hi Susie and Brendon
    I was happy to see your update, even though it was about the darn clogged feeding tube :). I have been thinking of you both and wondering how Brendon is doing. Half way through the radiation is wonderful news! I would stick with the feeding tube for nutritional needs now. He might not be able to handle any food by mouth. Why put yourselves through the hassle if you dont have to. Once the tumor shrinks some more, it will be easier for him to eat. And remember small amounts of liquidfied foods. You are doing a great job, keep it up! We are thinking and praying for both of you!
    Tina in Va
  • Susie_Brendon
    Susie_Brendon Member Posts: 128

    Thanks for Update!
    Hi Susie and Brendon
    I was happy to see your update, even though it was about the darn clogged feeding tube :). I have been thinking of you both and wondering how Brendon is doing. Half way through the radiation is wonderful news! I would stick with the feeding tube for nutritional needs now. He might not be able to handle any food by mouth. Why put yourselves through the hassle if you dont have to. Once the tumor shrinks some more, it will be easier for him to eat. And remember small amounts of liquidfied foods. You are doing a great job, keep it up! We are thinking and praying for both of you!
    Tina in Va

    Good Morning Tina
    Hi Tina - yes, half way through now... Yesterday his blood work showed white count down so praying that all those yucky germs stay away to avoid any kind of infection. Its getting harder and harder for him to swallow anything... He says the burning is pretty bad. The feeding tube is giving him his nutrients so happy about that, but he really can't afford to lose much more weight. Already down about 20 lbs since the start of all of this darn cancer. Also, with the burning sensation, I worry about dehydration. I got him some gatoraid over the weekend, so hopefully that will keep him hydrated...even if there's minimal calories in it. Today will be day 17 of radiaton...not that we're counting...haha...only 11 more to go after today.
    Hope you are doing well.
    Susie
  • Good Morning Tina
    Hi Tina - yes, half way through now... Yesterday his blood work showed white count down so praying that all those yucky germs stay away to avoid any kind of infection. Its getting harder and harder for him to swallow anything... He says the burning is pretty bad. The feeding tube is giving him his nutrients so happy about that, but he really can't afford to lose much more weight. Already down about 20 lbs since the start of all of this darn cancer. Also, with the burning sensation, I worry about dehydration. I got him some gatoraid over the weekend, so hopefully that will keep him hydrated...even if there's minimal calories in it. Today will be day 17 of radiaton...not that we're counting...haha...only 11 more to go after today.
    Hope you are doing well.
    Susie

    My husband had his last
    My husband had his last radiation treatment today. Now we wait to see when and if his trach tube and feeding tube come out. He is so looking forward to being able to eat again (it has been since his surgery on January 5th). The only time we had an issue with the feeding tube is recently. He has a lung infection and the liquid antibotic is so thick it would not go down the tube. The coke trick did not work. I finally had to squeeze the tube like I was massaging it and it finally went down. Now I mix it with his liquid nutrition and the problem is gone.
  • Good Morning Tina
    Hi Tina - yes, half way through now... Yesterday his blood work showed white count down so praying that all those yucky germs stay away to avoid any kind of infection. Its getting harder and harder for him to swallow anything... He says the burning is pretty bad. The feeding tube is giving him his nutrients so happy about that, but he really can't afford to lose much more weight. Already down about 20 lbs since the start of all of this darn cancer. Also, with the burning sensation, I worry about dehydration. I got him some gatoraid over the weekend, so hopefully that will keep him hydrated...even if there's minimal calories in it. Today will be day 17 of radiaton...not that we're counting...haha...only 11 more to go after today.
    Hope you are doing well.
    Susie

    My husband had his last
    My husband had his last radiation treatment today. Now we wait to see when and if his trach tube and feeding tube come out. He is so looking forward to being able to eat again (it has been since his surgery on January 5th). The only time we had an issue with the feeding tube is recently. He has a lung infection and the liquid antibotic is so thick it would not go down the tube. The coke trick did not work. I finally had to squeeze the tube like I was massaging it and it finally went down. Now I mix it with his liquid nutrition and the problem is gone.
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member

    Good Morning Tina
    Hi Tina - yes, half way through now... Yesterday his blood work showed white count down so praying that all those yucky germs stay away to avoid any kind of infection. Its getting harder and harder for him to swallow anything... He says the burning is pretty bad. The feeding tube is giving him his nutrients so happy about that, but he really can't afford to lose much more weight. Already down about 20 lbs since the start of all of this darn cancer. Also, with the burning sensation, I worry about dehydration. I got him some gatoraid over the weekend, so hopefully that will keep him hydrated...even if there's minimal calories in it. Today will be day 17 of radiaton...not that we're counting...haha...only 11 more to go after today.
    Hope you are doing well.
    Susie

    Hi Susie and Brendon
    I was

    Hi Susie and Brendon
    I was wondering if he can be prescribed a heart burn medication for the burning. Just a thought. The gatoraid is good, but he has to drink a lot of it to stay hydrated. He can go into the hospital to get rehydrated through IV if he has to. Keep keeping on! Things are going well for me, thank you!
    Tina in Va