Panicking!

[Silkwood20]

Hi everyone, my husbands been in hospital the last 2 weeks, with a very bad chest infection. Scan revealed the PEG (jejunal) had lost the inner extension, so feed was entering wrong area, causing aspiration.. feed was stopped, more antibiotics and finally chest is clearing!....great.By Monday he will have had no food for a week, just fluids IV.

Plan is endoscopy and fix jejunal tube this coming Monday/Tuesday.

Doctor informed me this afternoon that the gastroenterologist could decline to do this as 'too risky' . I understood it wasn't possible this week because of the chest infection.But this is a shock.

I asked what would happen, in that case and he answered 'I would have no options left'.

I am panicking now because does this mean they would let him slowly die of starvation?

He is a well built chap, not frail, this sounds horrific.

If the chest infection had taken him, that would have been sad, but easier to accept and surely kinder for him than a very slow death.

My husband is totally paralysed (apart from eye movements) has a trach and PEG. He has awareness most of the time. Life like this must be so hard for him I do realise. Yet he keeps on fighting.

There was something else on the scan, needs investigating they said, could be minor or more serious, can they use that as an excuse not to fix the feeding tube?

I just want to do what's best and kindest for my husband.

Maybe it will all be fine, these doctors do like to tell you 'worst case scenario' don't they!

Headway unavailable as it's weekend, I will phone Monday.

[Nanapal]

Good morning S20

I am unable to give any advice on your husband’s condition but just wanted to say I am thinking of you both.

Take care & best wishes for a positive outcome. Nanapal x

[Leaf100]

Add me to those who have no insight, SW, and wish to send best wishes for a positive outcome.Leaf

[Hay2210]

I’m sorry to hear that my husband also has a peg after a brain injury it’s awful for you to be told that , try not to panic easier said than done I know but hopefully it will all be sorted for you take care

[Percylovesbees]

I have to also confess ignorance in this which is very unhelpful BUT what I do know is that in his vulnerable state you are his loving advocate.

If you have a gut feeling that something is wrong, voice it and fight for him. That sounds hard advice but it comes from a loving heart and I understand as much as possible the pain you must be in and the helplessness this situation is causing you to feel.

Look information in medical papers and medical journals that you can that may give you the evidence and information you need to understand the situation rather than advice from non medicals.

Really fight for him, not soo much for yourself necessarily at the moment but for him as he has no way of fighting. I feel sure you have his best interests and that you love him dearly. Praying for you both.

I truly hope things improve and if you need an outlet, we’re always here as a listening ear.

Much love

P❤️🐝🐝

[cat3]

Yes m'love, do contact the helpline on Monday ; you need extra support with this. As your husband's infection was caused by a faulty PEG, maybe the doctor's 'option' should be to invite you to speak with the gastroenterologist concerning the risks of corrective surgery vs the inhumane alternative.

It's possible this is one of those 'Just in case' scenarios and that the surgeon will give the go-ahead. I really hope so Silkwood..

Thinking of you both and keeping everything crossed for the best possible outcome. Cat x