What to expect with jejunostomy feeding (PEGJ)

melmulliss
melmulliss Online Community Member Posts: 1 Listener
edited February 2023 in Families and carers
The heading of this sounds like we are new to this but Noah, our 5 year old son, has had a PEGJ since being 5 months old. We are SO frustrated right now. Noah had undergone very few tests to get to the bottom of why he cannot thrive eating orally. I was a nurse for 20 years & now his full-time carer. We have been faiuled since day 1 by the healthcare system & after years of fighting & involving our MP, NOah has finally been referred from QMC (Nottingham) who were beyond terrible to Sheffield Childrens Hospital. However, QMC have been ignoring requests from SCH since July 2022 for an MDT so they can fully take over Noah's care!

My question is this...... Noah has 2 good weeks where he is pump-fed overnight & rests during the day so he can function normally at school. However, he gets regular stomach cramps which have him crying out in pain & after every 2 good weeks, Noah then is unable to tolerate ANY feed for up to a week and a half and has mainly a low rate of rehydration salts just to keep him functioning. This function is so low that he literally spends half of his new school life at home sick.

We saw his new (although he still does noit have Noahs history) consultants on Saturday and when we mentioned the stomach cramps and 2 weeks of the month vomitting he was very nonchalant like that is normal.

Is this normal? We have done this for 5 years but am beginning to doubt our sanity here? Are PEGJ-fed kids sick this much? Do they experience such regular and intense pain?

I am at the end of my rope trying to find some support, advice or answers for Noah!

Comments

  • Hannah_Alumni
    Hannah_Alumni Scope alumni Posts: 7,866 Championing
    Hi @melmulliss

    I'm so sorry you've been passed from pillar to post with the hospitals. I hope that gets resolved soon so they can get to the bottom of why your son cannot thrive eating normally. 

    I did a little bit of reading on the GOSH NHS webpage and they have a section on "troubleshooting". I also saw that they asked if further information or support is needed one department to contact would be gastroenterology and another the stoma nurses. Would they be able to help?

    Also just to note, I have had to edit the justgiving page from your signature as it goes against community house rules. 

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