Ventilation

[Gillette]

Thanks for the tips, Ellie.

The water has been reduced to 100ml at a time. As for the Fortisips, I have lost more weight than they'd like, since I came in, not helped by having pretty much gone off food and drink completely so, as I say, we are tweaking all over the place.

[Devonmaid]

My husband was nauseous when I put fluids and fortisips through his syringe into his PEG. He now has 1000 litres, water, medications and flushes and 2 feeds a day through his PEG. I start from 7am approx and go through to approx 7pm, taking it slowly with a couple of hours break at lunchtime so he has a pureed meal and a coffee then. It works really well and he is getting all the vitamins, fibre etc needed with his feeds which is great.

[Ellie]

Hi Devonmaid,

I wonder if overnight pump feeding may suit your husband better? It's certainly more convenient and less labour-intensive than multiple manual feeds throughout the day, which would allow for a less rigid routine for you both.

He could still eat the pureed food and take fluids & meds through the tube during the day .

Just a thought....

Love Ellie.

[Terry]

Hi Dina;

I would think that around 200 ml in total at one time would be enough an give that time to work through. Even a half an hour before having some water apart from flushing the tube throw with 10 ml of water.

Glad to hear that they are giving you a extra fiber one.

Love Terry

[Gillette]

Hi Dina;

I would think that around 200 ml in total at one time would be enough an give that time to work through. Even a half an hour before having some water apart from flushing the tube throw with 10 ml of water.

Glad to hear that they are giving you a extra fiber one.

Love Terry

Hi Terry,

I am on overnight feeding but no longer with the extra fibre feed. During the day I'm having water flushed through several times and then eating and drinking what I want - which is very little.

[Ellie]

As an FYI...

If people don't know what a feeding pump looks like or how invasive one would be in a home setting, here is a photo of mine against an A4 sheet of paper, so you can judge its size.

As you can see, my Flocare Infity pump from Nutricia, in the 'Go' stand, complete with a bottle of feed, is smaller than the piece of paper




Hope this is helpful to someone.

Love Ellie.

[Kayleigh]

Hi Dina

If you feel like you would benefit from having more fibre, I expect the dietitian could adjust your feed accordingly... but hopefully the nurses and dietitian are keeping a close eye on the situation to make sure you are not getting tummy upsets etc.

Do you think your lack of appetite is due to feeling full up from the tube feeding - or perhaps the hospital food is not very appetising??

I hope the meeting on Thursday about your CHC funding goes well. You might find that when you are back in your home environment your appetite might increase a bit, especially as you won't have the limitations of the hospital menu to chose from.

Love and hugs,
Kayleigh x

[Sheila]

Hi Dina!
Do you think at the start they were giving you too much feed? I hate to say the word but force fed a bit?? I hate the feeling of being full up. Like Kayleigh said when you are home, your appetite will be better! Everyone is different, myself I have a poor appetite, never have been a big eater actually. So if I have a peg done, I know they will have lots of trouble with me Lol!!!

Love Sheila x

[Gillette]

Hi Kayleigh,

Yes, the staff are keeping a good eye on all of it.

As for the loss of appetite, it began before the PEG was fitted. It happens periodically and, in fact, was one of the key reasons for my decision to have the PEG fitted.

[Gillette]

Hi Dina!
Do you think at the start they were giving you too much feed? I hate to say the word but force fed a bit?? I hate the feeling of being full up. Like Kayleigh said when you are home, your appetite will be better! Everyone is different, myself I have a poor appetite, never have been a big eater actually. So if I have a peg done, I know they will have lots of trouble with me Lol!!!

Love Sheila x

Hi Sheila,

No, I don't think they were actually force feeding me. I don't remember them forcing me in any way. I have been involved and had choice every step of the way.

Things seem to be bobbing along quite well, at the moment.

[Sheila]

Hi Dina,
Good to hear things are going along quite well, at the moment. And they are treating you very well.
Best wishes
Sheila

[Gillette]

Hi Sheila,

Yes, I'm being treated very well, thank you. It is a lovely ward. It is a specialist ventilation ward with excellent staff : patient ratios, which mean that staff have a little more time to talk to patients. I think that, in the north west of England, we are very fortunate to have access to this facility.

Oh, and, as I am medically fit for discharge, I have a Get Out Of Jail Free Card so that I can go out for the day, or the evening!

[Lynne K]

Hi Dina. It's good that everything is progressing well and that you can get out. Sounds like we are lucky in our area. Lynne

[Hayls]

Dina, you are an inspirational person, I’ve just managed to catch up with your thread, what a rollercoaster you’ve been on but so glad your resilience and determination has kept you going, so glad your getting out to spread your wings

My previous life before all this (MND) started was to facilitate people to remain as independent as possible in their own home, I’ve had experience in being involved in setting up packages of care and I’m a big believer in Direct Payments, I live on the south coast so it’s the retirement capital of the UK and we have a huge amount of care agencies providing care at home. Don’t get me wrong there are amazing carers out there but I’ve tried so many companies and quite often the same problems occur. Having you own personal budget will mean you have more control of having a package of care that works for you and so you don’t loose control, I’ve seen this happen but in my career I managed to change quite a few peoples lives for the better including my Dad’s with his FTD but I could see the difference it made to his life and others.
I know you’ve got a lot going on and I’m needing a PEG very soon but I just wanted to let you know about what little knowledge I have so you can make the right choice for you with the information you have, thank you for sharing your journey, I’ll make sure I’m armed and ready for anything heading my way, hope you find some sunshine while out today
Big hugs

[Gillette]

Hi Hayls,

Oh, crikey, I don't think I'm any different to anyone else. I'm just trying to cope with everything this horrid disease throws at me. Actually, if I wasn't restricted by MND, I'd be able to dodge the cr*p more easily.

I shall bear in mind your experience and shout if I'm getting in a stew. Thank you.