Newbie with major feeding tube problems

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lisa333
lisa333 Member Posts: 12
edited March 2014 in Esophageal Cancer #1
I am contacting you all late at night hoping that we, can get some information and help for our wonderful father. He has esophageal cancer with a 5 cm tumor, the cancer is also at the base of his esophagus, liver and lymph.We are really struggling with his feeding tube and have been to multiple Dr's and the Emergency today for hours with no help for his problems. I hope that you can help from your experiences and give some advice what to do to get these issues resolved. He is in pain at the Peg site , it is red and oozing, We have not gotten the "pop" you are supposed to get to check tube placement for 2 days. I can only get a 5 to 10 cm residual when I check it unless I have given him a water flush.They did a water flush there and were able to get residual and so claimed him fine. They did say that his stomach was VERY active for noise. He is feeling bad tonight Very full with just 8 oz of Hn ,with a distended belly, nauseated, has had 2 explosive water bowel movements We could not do his evening Med's as he was too full. His throat is very red and he feels a back up there of food or fluid. We want to have him checked into the hospital and tests run to see if the tube is out of place or what else could be wrong and are getting nowhere with the Dr's we have see. The Er here is useless. What tests should we ask for and anything else that you have experience with that you could advise us on would be so helpful! We are seeing his Radiologist Dr tomorrow to Discuss chemo situation and if he should have treatments not at this point.I am so glad that I found this site to ask questions from people who have been thru this and other situations like ours. Please email us and share your ideas and suggestions.We have to get help soon for him that works. Thank you! Lisa

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  • Unknown
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  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #5
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    Welcome to Our Family
    Hi Lisa,
    I was a caregiver for my dad. He unfortunately recently passed away on 3/9/10. He beat ec, but in December he got mets to his liver. He could not beat this. You have come to the right place. There are a lot of people here that can help you. Sounds like your dad is going through a lot of "stuff". That is typical for this cancer and the treatments. There are lots and lots of bumps in this road. You as a caregiver are doing a great job. You are finding out as much information as you can. Continue to do so. Bring a notebook with you to write down questions and get the answers for. Begin to write a journal. This helped my family tremendously. It is hard for some of us to communicate, and it is easier for us to write our feelings down. I would advise that you must contact his dr. Either the ongologist, or his primary dr. Have him admitted into the hospital. If his dr admits him, you can avoid the ER all together. I will be praying for all of you daily. Give yourself, your dad, and your family a giant hug. Come back to this site daily, it will help you to cope.

    Tina
  • lisa333
    lisa333 Member Posts: 12
    #6
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    Tina Blondek said:

    Welcome to Our Family
    Hi Lisa,
    I was a caregiver for my dad. He unfortunately recently passed away on 3/9/10. He beat ec, but in December he got mets to his liver. He could not beat this. You have come to the right place. There are a lot of people here that can help you. Sounds like your dad is going through a lot of "stuff". That is typical for this cancer and the treatments. There are lots and lots of bumps in this road. You as a caregiver are doing a great job. You are finding out as much information as you can. Continue to do so. Bring a notebook with you to write down questions and get the answers for. Begin to write a journal. This helped my family tremendously. It is hard for some of us to communicate, and it is easier for us to write our feelings down. I would advise that you must contact his dr. Either the ongologist, or his primary dr. Have him admitted into the hospital. If his dr admits him, you can avoid the ER all together. I will be praying for all of you daily. Give yourself, your dad, and your family a giant hug. Come back to this site daily, it will help you to cope.

    Tina

    Newbie with feeding tube issues
    THANK YOU ALL ! for your emails.
    We have been at the hospital and Dr appointments ect trying to get him admitted but no luck. We had an ultrasound and there was a possible blockage in the tube which was pushed out with the barium Xray. He was FILLED with air.
    A lot has happened since I first posted. We are on the way back out to have my father hydrated and meet a social worker but I will log on the evening and be in contact with you all and relate what is going on and see if you have any ideas that will help our situation.
    He gets Very full and nauseated when he is fed or even given med's
    We are asking for the pump feed method instead of the gravity feed that we are using now hopefully to help with this? any thoughts on this?
    His wound site at the peg site is oozing and getting larger both inside and out.
    We have requested the operating Dr to to view this are waiting for appointment and results from from swab at that site
    Does anyone have experience with why he would get nausea even from iv hydration with an anti nausea zofran included to prevent this? They say the two have NO connection but this is happening.

    With the Dr's advice on his condition my father has decided against chemo after his 10 radiation treatments to shrink the tumor and we are going to set up palliative care before hospice care if we can, to get these health/sickness problems resolved first.

    It has been related that it really is his only choice if he is to be a able to have quality of life which we so desperately are trying to get for him with all of these ongoing problems that are not being properly addressed and cared for.
    We are in Midland Michigan, This area does not have the best care for cancer but it is what we need to work with, I don't think that we can move his care at this point.

    I will be back this evening after we get him settled.
    Thank you all until then.
    Lisa
  • Unknown
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    #7
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    lisa333 said:

    Newbie with feeding tube issues
    THANK YOU ALL ! for your emails.
    We have been at the hospital and Dr appointments ect trying to get him admitted but no luck. We had an ultrasound and there was a possible blockage in the tube which was pushed out with the barium Xray. He was FILLED with air.
    A lot has happened since I first posted. We are on the way back out to have my father hydrated and meet a social worker but I will log on the evening and be in contact with you all and relate what is going on and see if you have any ideas that will help our situation.
    He gets Very full and nauseated when he is fed or even given med's
    We are asking for the pump feed method instead of the gravity feed that we are using now hopefully to help with this? any thoughts on this?
    His wound site at the peg site is oozing and getting larger both inside and out.
    We have requested the operating Dr to to view this are waiting for appointment and results from from swab at that site
    Does anyone have experience with why he would get nausea even from iv hydration with an anti nausea zofran included to prevent this? They say the two have NO connection but this is happening.

    With the Dr's advice on his condition my father has decided against chemo after his 10 radiation treatments to shrink the tumor and we are going to set up palliative care before hospice care if we can, to get these health/sickness problems resolved first.

    It has been related that it really is his only choice if he is to be a able to have quality of life which we so desperately are trying to get for him with all of these ongoing problems that are not being properly addressed and cared for.
    We are in Midland Michigan, This area does not have the best care for cancer but it is what we need to work with, I don't think that we can move his care at this point.

    I will be back this evening after we get him settled.
    Thank you all until then.
    Lisa

    This comment has been removed by the Moderator
  • lisa333
    lisa333 Member Posts: 12
    #8
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    unknown said:

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    nutrition and j tube
    Dear Sherri,

    Thank you for your input and ideas.
    Yes There have been problems from the beginning with the tube, and the cut at his peg site is getting larger INSIDE and out .and oozing alot
    I have contacted and requested the Jtube option along with the pump to keep him more stable on his food intake with less air ect from several sources,visiting nurses, and anyone we have seen to have them attest to to need for the change.

    You are exactly the person that I was going to contact to find a recipe that I can make or get for him besides this high sugar "fibersource HN" I know from reading online that you have great knowledge.
    I follow myself a healthy food lifestyle using only stevia as much as possible I have at home a Vita mix and we can get one here right now if we can make his food source ourselves from a good plan for his needs.
    Yesterday he only received 280 ml Hn for the day total with 2 liters of iv Fluids and his meds and med flush water. He becomes VERY full and needs to stop, I think it is the product partially causing these problems. Today we are meeting social workers and doing his iv appointment and others I will be home to read this later. We are seeing his GI dr tomorrow to see if she will make these tube/pump changes. Please send me any addition thoughts or information that you have so that I can use that information tomorrow.

    Here in this town/ medical center they do not give any credibility to nutrition so I will handling those changes myself.
    Thank you Sheri!

    Lisa
  • Unknown
    Unknown
    #9
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    lisa333 said:

    nutrition and j tube
    Dear Sherri,

    Thank you for your input and ideas.
    Yes There have been problems from the beginning with the tube, and the cut at his peg site is getting larger INSIDE and out .and oozing alot
    I have contacted and requested the Jtube option along with the pump to keep him more stable on his food intake with less air ect from several sources,visiting nurses, and anyone we have seen to have them attest to to need for the change.

    You are exactly the person that I was going to contact to find a recipe that I can make or get for him besides this high sugar "fibersource HN" I know from reading online that you have great knowledge.
    I follow myself a healthy food lifestyle using only stevia as much as possible I have at home a Vita mix and we can get one here right now if we can make his food source ourselves from a good plan for his needs.
    Yesterday he only received 280 ml Hn for the day total with 2 liters of iv Fluids and his meds and med flush water. He becomes VERY full and needs to stop, I think it is the product partially causing these problems. Today we are meeting social workers and doing his iv appointment and others I will be home to read this later. We are seeing his GI dr tomorrow to see if she will make these tube/pump changes. Please send me any addition thoughts or information that you have so that I can use that information tomorrow.

    Here in this town/ medical center they do not give any credibility to nutrition so I will handling those changes myself.
    Thank you Sheri!

    Lisa

    This comment has been removed by the Moderator

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