Hello I’m Douglas

[Kayleigh]

Hello Douglas,

Hopefully you were able to get more sleep last night.

How is the purée diet going? - as it's Sunday today, I think it would be good if they offered the option of a puréed roast dinner!

I do hope the hospital caterers are following the Hospital Trust's advice about a purée diet, so that your food is as appetising and nutritious as possible:-

http://http://www.srft.nhs.uk/EasysiteWeb/getresource.axd?AssetID=33180&type=full&servicetyp e=Inline

I hope you have a relaxing night tonight and your CO2 levels continue to improve.

Best wishes to you and your wife,
Kayleigh x

[Gillette]

Yes I’m in the North West Ventilation Unit ward

Most of the men who have been in this side ward are fellow MND sufferers so most of the staff are great with it. What’s a bit worrying is how many are past alumni...

Anyway the CO2 is now 6.7

Is it a mixed ward?

I can understand your feelings about the other patients but just remember, everyone's MND journey is different.

Good news that your CO2 levels are coming down.

[Dis1960]

How is the purée diet going? - as it's Sunday today, I think it would be good if they offered the option of a puréed roast dinner!

I do hope the hospital caterers are following the Hospital Trust's advice about a purée diet, so that your food is as appetising and nutritious as possible:-

Badly, unappetising, tasteless and a consistency to simply coat the tongue

Roast chicken, stuffing, creamed potatoes and parsnip/swede but nothing tasted

Nutritious?

[Dis1960]

Is it a mixed ward

yes Dina but each side ward is single sex

I apologise if alumni was taken badly but 3 of the 7 so far have been in the unit previously within the last year and only1 is in because of a chest infection

[Gillette]

I apologise if alumni was taken badly but 3 of the 7 so far have been in the unit previously within the last year and only1 is in because of a chest infection

Hi Douglas,

I have no problem with the word 'alumni', in fact, I thought it was a good word to use. I just meant that it was understandable that knowing several of them had been in previously would be disheartening.

[Dis1960]

knowing several of them had been in previously would be disheartening.

The opposite - they were happy to come back and the partner of the guy with the chest infection fought to get him in this unit from a normal ward. People who’ve been here are happy with their treatment

Blood CO2 back to 6.8

[Terry]

Watching Amazon Prime ( Good Omens ) and Netflix ( iZombie and Lucifer ) when I can

Yesterday my wife was given a whistle stop tour of the Nippy screen

Don't think I'll be visiting you if that's the type of thing you watch, Douglas;

I guess they puree together and it's served near cold. You seem to be having enough fluid.

I hope CO level comes down tonight.

Love Terry

[shrew]

I do hope that your levels drop again and you have a good day

[Dis1960]

Nope 6.8 again

The doctor is still aiming for 6 or below before PEG - I asked about RIG but that was ignored again

Last night was notable for 4 attempts to get blood from my earlobe at 0500

[Ellie]

Last night was notable for 4 attempts to get blood from my earlobe at 0500

Surely they can take blood from an artery if they had such difficulty taking blood from your earlobe?

If done by an experienced hand, it isn't a painful thing - I've had a few done - and it may give a more accurate CO2 reading if you're in that ~ 10% of people whose capillary CO2 levels don't correlate to their ABG (arterial) CO2 levels. Either way, an ABG really should be done, if even to rule out a variance.

You're in a hospital for Pete's sake...

Enjoy your TV today but I won't say enjoy your lunch
Love Ellie.

[nunhead_man]

Hi

Sorry for butting in but what is this CO2 reading about?

My recent breathing jobette was based on the diference betwen a breath volume standing and lying down - they said 90%?

Also they got blood from my ear by warming it with something that made it red and bleed like crazy after scratching and then catching the blood. But did not get any results.

It was the 90% and my overnight blood "Ox" monitoring results that got me sent off to St Thomas's breathing unit for a Nippy.

Warmly

Andy (Vote for me as an MND trustee!)

[jonboy53]

My home respiratory team would not let me have a Nippy - so I bought my own. My etCO2 is 45mmHg now so I use the nippy if I get headaches upon waking. Most ALS patients will get type two respitory failure. This is because the diaphragm and intercostals become so weak there is not a large enough tidalvolume to flush out the CO2. Exhalation is 5% CO2 in a able bodiedperson bt this felies on a 500ml tidal volume

[jonboy53]

cant type much - right arm exhausted now

[Dis1960]

Sorry I wasn’t told last night’s reading as today was spent trying out nose masks that would be used in PEG - I really didn’t like the pressure bombarding my nostrils

To be continued

[Terry]

Hi Dis,

I would have thought that they would have to do a RIG feeding tube opp because of your breathing. I think that still involves a very small tube going up your nose but I would have thought that a normal mask would then go over it.

Love Terry