Progress following food tube fitting

Hi Dani, I actually told the Scarborough contact that I would remove him to take to Hull but he is connected to lots of drips of various things so it would be tricky in practice. Of course I got the ‘If anything happens to him on route we won’t be responsible…. Speil so I left it. The pain was PEG related, thank goodness. It was apparently leaking and filling his stomach with air and became infected. Any way if you see my reply to Mel above, we have, I hope, turned a corner and might actually get back on track tomorrow. Thanks again for your support, it has been a huge comfort to get an informed opinion. Onwards and upwards.

Hello Lynda, just seen your post to Dani, with my husband having a PEG himself,I am trying to work out what can cause a leak, I know there can be chances of infection at the insertion area or it can fall out, but wasn't aware of it leaking and filling stomach with air. Goodness,poor bloke ,no wonder he's in pain. Fingers crossed he can concentrate now on his treatment x

Hi Mel, no we were told about infection risk or fallout but not that it might spring a leak. I guess it just wasn’t fitted as it should have been so after 24 hours it was causing him no end of problems. We have decided to look forward now and just hope this particular issue has finally been sorted. Thanks again for your help x

Topsymum said:

We have decided to look forward now and just hope this particular issue has finally been sorted

Don’t despair Lynda

Not having a PEG is not that important. I wasn’t offered one and I managed perfectly well with a nasogastric tube which took minutes to place when I needed it. 

Hi Linda, one of my daughters who has a medical background educated me, this can happen with PEGs also not very often, good that it is sorted, all the best wishes, talk soon, Mel x

Hi Lynda So sorry to hear this I’ve been out and about glad he seems sorted. Yes sometimes the nhs is disjointed but as Scarborough  this time seems to have been incompetent as well.

I managed fine with a ng tube if he needs one 

hugs Hazel xx

Hello again Hazel. I didn’t start this story with a view to trashing the NHS which I realise is so under pressure at this time. As you say, rather it is the incompetence all the way through that has really floored me, along with a general failure of all the medical staff concerned to pass on information at a time when someone definitely feels their life is under threat. We have to put it behind us and get on with what lies ahead but it has definitely taken its toll on us both. Thanks for the vote of confidence for the ng option, I guess we will take what we are given. Many thanks for your input.

Hi Lynda

the ng tube was both Dani and mines lifesaver. We’re here to help you. Once treatment starts the radiotherapy teams will be your point of contact and your faith will be restored in the NHS. Hugs 

Hazel xx

Aw Lynda.  So sorry you and your husband are having to go through this and I just wanted to give you a little support.

I hope you have turned that corner and things start to improve.

Stay strong lass and sending you hugs.

Gill xxx

Thanks Gill.I've just been told he will not be having an operation on the PEG and they are in the process of discharging him back home ready for RT in the morning. So we are both now in a very positive frame of mind.