2 week rollercoaster

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TWell after 7 relatively quiet radiation weeks things changed drastically. Last 2 days of rads and next few wife unable to handle her ensure and even water. Got severely dehydrated and lost 7 lbs. On Monday appt with oncologist she recommended a feeding tube. Started fluids that night and was admitted. Procedure for peg on Wed was aborted as her crohns stomach got in the way. Only options were surgery for the peg or a nose tube. Not interested. Dr saidif she could do her ensures and water Thur she could go home "naked" and would do outpatient nose tube later if necessary. Being re hydrated cleaned up the mucuitis in her mouth and she passed the test Fri and Sat. Came home Sat and headed into week 2. Now 1 week later doing her ensure/water and finally eating semi solid foods. Fentnyl patch_25_ and magic mouth wash for cheek pain. Even has some taste but still some mouth sores. Into week 3 post and hope the trend continues in this direction. Thanks to all here--I learned a lot which helped the trip.

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Awesome....
    More than likely it'll be a slow process, but sounds like she can do it now.

    Continue making sure she gets the fluids and calories into her...that's huge right now.

    Best,
    John
  • Billie67
    Billie67 Member Posts: 898
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    PICC line
    If nourishment becomes a problem you may want to ask about a PICC line for feedings. Most people tend to think of these for mostly meds or antibiotics but nutrition can also be given thru there. My son had his for a year for that main purpose. At times I wished I had that instead of the PEG.
    It's nice because it goes in your arm and you don't have this huge long tube hanging out of your belly that you must try to conceal somehow. Hydration can also be done via PICC as my son had that a few times too. Any blood draws,,,,,,PICC, chemo....PICC it's this great one stop shop so to speak.
    Much better than having to do an NG every time she needs it.

    Good luck,
    Billie
  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    bam, pow, zonk!
    Vandyike,

    Sounds like a rough patch, so sorry. Keep the nutrition and hydration coming; it will be getting better much faster real soon.

    Best,

    Matt
  • bonefamily
    bonefamily Member Posts: 27
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    Billie67 said:

    PICC line
    If nourishment becomes a problem you may want to ask about a PICC line for feedings. Most people tend to think of these for mostly meds or antibiotics but nutrition can also be given thru there. My son had his for a year for that main purpose. At times I wished I had that instead of the PEG.
    It's nice because it goes in your arm and you don't have this huge long tube hanging out of your belly that you must try to conceal somehow. Hydration can also be done via PICC as my son had that a few times too. Any blood draws,,,,,,PICC, chemo....PICC it's this great one stop shop so to speak.
    Much better than having to do an NG every time she needs it.

    Good luck,
    Billie

    just to clarify
    PICC's are wonderful - but please, please note that the nutrition options are strictly limited to sterile IV fluids and a sterile nutrition mixture called TPN - total parenteral nutrition.
    You CANNOT infuse standard tube feeds, ensure or ANYTHING else in them. People have died making that mistake, so please don't try this at home! The end of the PICC lies at the entry to your heart. Do not fill your heart with ensure. :)
  • Billie67
    Billie67 Member Posts: 898
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    just to clarify
    PICC's are wonderful - but please, please note that the nutrition options are strictly limited to sterile IV fluids and a sterile nutrition mixture called TPN - total parenteral nutrition.
    You CANNOT infuse standard tube feeds, ensure or ANYTHING else in them. People have died making that mistake, so please don't try this at home! The end of the PICC lies at the entry to your heart. Do not fill your heart with ensure. :)

    Of course...
    Of course the feedings are different but nourishing just the same. TPN and lipids come ready from the pharmacy. Of course there is no way to infuse ensure. I Never would have suggested that! I was simply saying that there is another option should one need it. I'm sorry if this caused any confusion however I'm sure there would be patient training on the subject. As for the placement, it does indeed deposit the TPN&lipids to the vena cava which would nourish one but not give them the full feeling. For me that would have been nice because using my PEG filled me up and I had a hard time adding anymore calories by mouth. Anyway, again sorry for any confusion on this issue.