If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Concerned about the Coronavirus?


We've put together some helpful information and advice about Covid-19 on our website.

You can also read about: improving your wellbeing, getting food and essentials and claiming benefits during this time.

Jejunostomy after 11 years of feeding orally..

barneypupbarneypup Member Posts: 17
edited May 2014 in Parents and carers
My eleven year old daughter has just recovered from a very serious and terrifying bout of pneumonia. After 11 years of general good health, considering the degree of her CP. She is now considered to have an unsafe swallow and a peg was suggested as a solution. Unfortunately an attempt to insert a gastostomy failed in theatre as she has a scholiosis which impeded access to her stomach wall as her ribs were in the way. A jejunostomy appears to be the only alternative as she is being currently fed nasogastrically which obviously is not a long tern option. I have no real information on the day to day management of a jejunostomy so would appreciate any information anyone might have, Thanks.

Replies

  • imogen37imogen37 Member Posts: 61 Listener
    Hi

    Do you think she has an unsafe swallow?

    x
  • barneypupbarneypup Member Posts: 17
    Yes after seeing the videofluroscopy, I would agree that although she can manage her swallow it's clearly not easy for her and therefore not as safe as it could be.. I appreciate your question .. I was encouraged to get her a peg fitted years ago when she was 18 months old and refused as it was not necessary.. However after her stay in icu at alder hey for nearly 10 weeks, my confidence is obviously rocked.. I presume you don't have any experience of jejunostomys? X
  • imogen37imogen37 Member Posts: 61 Listener
    Hi


    No, none whatsoever, hence the question!

    Hope you find the asnwers and make the best decision!

    x
  • barneypupbarneypup Member Posts: 17
    Thank you.. I really appreciate you taking an interest..It was nice to get a reply..Jejunostomys are quite rare but apparently being performed more often to reduce the need of a fundo.. Whats your situation? x
  • imogen37imogen37 Member Posts: 61 Listener
    Hi

    I have 19 month old son with severe spastic quadruplegia. Once I got over the schock of the diagnosis and got practical, things have been ok. He is still needing fed, but eating most normal things and is happy to chew, even though his biting is pretty weak.

    Just managed to kick lactose intolerance a couple of weeks ago, so it's another victory to Marten!

    Do you have a pead nurse or HV who could give you advice re day-to-day management?

    x
  • barneypupbarneypup Member Posts: 17
    Yes,I have asked everyone i could think of,

    but unbelieveably,

    little is known about them by the stoma nurses, icu/hdu nurses, dieticians, hv;s or gps,, even the surgeon couldnt answer questions about the day to day management..

    Im just about getting to grips with it now..

    .You have been really kind in replying to my posts.. Im abit further down the road than you in years, so I hope i can help you with something along the way ,,my daughter Alice has severe quadrruplaegic cp, x
  • barneypupbarneypup Member Posts: 17
    Yes,I have asked everyone i could think of,

    but unbelieveably,

    little is known about them by the stoma nurses, icu/hdu nurses, dieticians, hv;s or gps,, even the surgeon couldnt answer questions about the day to day management..

    Im just about getting to grips with it now..

    .You have been really kind in replying to my posts.. Im abit further down the road than you in years, so I hope i can help you with something along the way ,,my daughter Alice has severe quadrruplaegic cp, x
  • imogen37imogen37 Member Posts: 61 Listener
    Hi

    Been thinking, what about posting on Bliss, the prem baby charity? Babies come home with various medical conditions and equipment, some mums/dads may have experience with it.

    Good luck!

    x
Sign in or join us to comment.