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menamum
25th March 2016, 16:33
My mum was to have the rig fitted but when she went to surgery she could not tolerate lying flat so the procedure was abandoned. Her swallow is very weak, so what options would be still available to her. Her consultant wont be available to assess her again today, so if someone could let us know what we may be faced with would be greatly appreciated.

Terry
25th March 2016, 17:07
Hi Menamum;

If she was going in for a PEG then there is alternatives.

Don't worry there are other procedures that should be possible including a RIG.

If it is very bad then they can feed her via a nassal tube or use that till she gets a feeding tube fitted.

Is she drinking and eating enough at the moment.

Love Terry

Katrina36
25th March 2016, 17:10
Hiya menamum, sorry to hear they had to abandon that and your mum couldn't get it done.

Is there an option for her to have a nasogastric tube placed?, she can get that done awake, sitting up ... Katrina x

Dude
25th March 2016, 19:34
Hi How bad is mums swallow. Can she eat at all . Dude x

MNDConnect
29th March 2016, 14:24
Hi menamum

I am replying from mndconnect.

We are so sorry to hear that your mum was not able to have the RIG fitted because she could not lie flat.
This does sometimes happen. In such instances a percutaneous endoscopic gastrostomy (PEG) may be possible using non invasive ventilation (NIV).
It would be best for you to speak to the consultant concerned about this. He/she may look at this possibility provided that there are no other reasons for this not being possible.

The advise that you have received on the forum re naso gastric tube is good, as this may be helpful as an interim measure until any other possible method of tube feeding your mum has been sorted.

It would be good if you could phone us on our Freephone number 0808 802 6262 Mon-Fri 9am-5pm when we can discuss this more fully with you, as this might not be as straight forward as it seems.

We look forward to hearing from you.

Best wishes.

Jane.

daffodilly
29th March 2016, 15:55
Hi
My husband, who has ALS, is beginning to consider tube feeding. The book makes it sound problem-free, but ... Are any forum members able to share experiences, please, good or bad? Thanks.
daffodilly

Terry
29th March 2016, 17:19
Hi Daffodily;

It's certainly not problem free but normally the pain is bearable with some over the counter pain killers and lasts a couple of weeks. Like all opps it does have some risks but because you are not put out, it is very small.

Like wise, normally the feeding takes a bit of getting used to. I have had one for three years and have only every used it for hydration but it is nice to have it there if I need it.

Love Terry

daffodilly
29th March 2016, 17:47
Thank you, Terry. I will pass your comments to my husband.
Love, Daff.

Terry
29th March 2016, 18:01
If he has any questions etc, then just ask.

menamum
29th March 2016, 18:54
Thanks Terry, Katrina, Dude and Jane. Unfortunately mums consultant is on leave at the moment so we have got no further forward. Although in saying that her respiratory specialist has stepped in and put her on the nippy. There is talk of her having to go to a different hospital where there is someone who is more specialist in this procedure. Her swallow is now pretty bad, ad she can only manage food that has the consistency of custard.Puréed food just looks soo unappetizing, I cant blame her for having no appetite!! Thank you all so much for replying.
Much love, Bee.

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