Ventilation

[Sheila]

Hi Dina
How are you doing. I am sure you will be fine and soon be back home. Thinking of you.
Love Sheila

[Dis1960]

You may have a nose only mask as well for the PEG trials/procedure

Also remember when they ask coffee or tea you can ask for cold milk or water flavoured with cordial

Good luck

[Ellie]

Hi Dina,

In a way no notice of your admission was good, it eliminated days of potential stress of an iminent stay. And I'm glad that bed didn't become available last Friday

For the NIV machine, please be aware that the best mode setting for those of us with ALS/MND is pressure support mode, because it lessens the 'Work of Breathing' effort most of all on our respiratory muscles which, after all, is the purpose of NIV!

Our lungs are not damaged, our muscles are, so we are different to those with chronic lung conditions, which not every healthcare professional gets

Best wishes for your stay and for the sleep study.

Love Ellie.

[Terry]

Hi Dani,

1 am, you must have got that time wrong. Nobody phones at that time unless they are in trouble. Crazy and ambulance transport sounds about right.

As Ellie says, it stopped you worrying much. Please LISTEN to what Ellie says and also get all the settings, modes, times and write comments on each.

Also record any information, especially blood Co2 and O levels.

Great advice from Douglas and see if he has any more tips.

Hope you are comfortable, etc.

Love Terry

[Gillette]

You may have a nose only mask as well for the PEG trials/procedure

Also remember when they ask coffee or tea you can ask for cold milk or water flavoured with cordial

Good luck

Thanks for that, Douglas.

[Gillette]

Hi Ellie,

I was quite looking forward to the stay as it has given my partner a break from his usual caring role. I had already told the consultant that I wouldn't be admitted until this week as my granddaughter's visit took precedence! Heaven help anyone who is fool enough to try and prevent this Nana from cuddles with her Cherub!

I think the pressure support mode is the one I've been on today. They said the other mode is what I would have to be on during the PEG procedure.

I was impressed with the consultant who came to see me today. He respected my stated choice of not wanting to use NIV during the day, in the future. Some of the medical staff have seemed to question why I would have it at night but not during the daytime. Well, that's their problem, not mine.

[Kayleigh]

[QUOTE=Terry;91371]"Hi Dani,"

Hey Terry,
Do you have Dani Minogue on your mind? I thought you'd prefer her blonde sister - Kylie! LOL

Love Kayleigh x

[Kayleigh]

Hi Dina,

It good to hear from you and I'm glad you have got a good Consultant. Hopefully the nurses are making sure you are comfortable and you have everything you need.

Love Kayleigh xx

[Terry]

Hi Dina;

Sorry about getting your name wrong. LOL.

Some of the medical staff have seemed to question why I would have it at night but not during the daytime. .

Some of the staff maybe don't know a lot about MND and breathing. I think that trying it out in the day time is good till you get it set up and then it's your choice. Most Mnd people seem to get their breathing troubles at night to begin with and not while they are awake in the day time.

Love Terry

[Kayleigh]

Hi Dina;

Sorry about getting your name wrong. LOL.

Love Terry

It was probably the fault of 'predictive text' - it can be so annoying when a word we type automatically changes to a different word than we wanted it to be!

It can happen to any of us Telly .... oops, I mean Terry. (But If you ever refer to me as Kylie rather than Kayleigh - I'll know it's because you are daydreaming about those Minogue sisters again!) LOL

Love and hugs,
Kayleigh x

[Gillette]

Hi Dina;

Sorry about getting your name wrong. LOL.

Love Terry

That's OK, Terry. I apologise as I had no idea you had dyslexia.

As for daytime use of NIV, it was simply part of the discussion about use of NIV. Some medics seem to think that once patients start using it they will continue to the bitter end, ramping up to daytime use as and when the breathing deteriorates to the point where it is needed. I have said that, at the moment, I don't see daytime use as an option suitable for you. Obviously, it's possible I will change my mind at the time.

[Gillette]

I had a useful session with the specialist nurse today about the NIV.

I managed to use it for 4 hours last night, which I thought was pretty good, especially considering how things had been in the evening. This afternoon I had a practice with the IPAP at 10, up from 8 last night. We have organised what the settings will be tonight. The IPAP will start at 8 and be increased to 10 a little while later.

This morning my CO2 level was 6.5 and O2 was 10.6.

[Ellie]

That's great news Dina, congrats on doing 4hrs.

What type of mask did you use? It must have been pretty comfortable - no leaks or skin marks?

I'm sure it was explained to you that your CO2 is a tad high, so hopefully with the IPAT at 10 and if you manage a few more hours on NIV tonight, that will come down.

Did you feel the machine worked in sync with your breathing and nothing felt forced once you relaxed into it?

I hope the rest of your admission goes as well.

Love Ellie.

[Music man's wife]

Hello Dina.
Hubby has been on ventilation for over a year now. We do put on dressings on his nose and gel strips on his neck. All to stop the straps digging in.
During the day he has an identical machine on different settings. He uses this with a mouth piece, a bit like sucking on a pipe. It's quite unobtrusive and the machine hangs on the back of his electric wheelchair. He just uses it now and then when he's headachy or tired. All to get rid of the Co2.
Better than sitting with a mask on during the day.
Anyhow hope all goes well.

[Gillette]

That's great news Dina, congrats on doing 4hrs.

What type of mask did you use? It must have been pretty comfortable - no leaks or skin marks?

I'm sure it was explained to you that your CO2 is a tad high, so hopefully with the IPAT at 10 and if you manage a few more hours on NIV tonight, that will come down.

Did you feel the machine worked in sync with your breathing and nothing felt forced once you relaxed into it?

I hope the rest of your admission goes as well.

Love Ellie.

Thanks, Ellie. I was pretty pleased that I had managed 4 hours. Mind you, I had asked them to wake me to put the mask on and when it was done I fell back to sleep immediately. Consequently, I wasn't aware of it at all! The mask is called a full-face mask and covers the mouth and nose. I tried the nose-only mask but didn't like it much. However, I have asked to have more practice with it in readiness for my PEG insertion.

The specialist nurse explained what all the readings are and explained about the consequences of the CO2 being above 6.