February 2006
The weather has been so cold this month,we've even had some snow. So I've not been out much,only once across to a local restaurant.I managed a few spoonfuls of soup and a bottle of Guiness and quite enjoyed it.
My stomach problem has got a little better now so I've not had to spend any days in bed,thank goodness.
I've been feeling tired earlier in the day now,even to the extent of going to bed at 7.30pm without a beer!
My physical ability hasn't seemed to get any worse for a while,although I can see the muscle mass decreasing in my legs.
I'm no longer having feed at night now,I wasn't sleeping well and it was causing me to be sick in the mornings, so I have it during the day now. Well,it ain't natural to eat while you're sleeping! Trouble is,it seems to be going straight through me at the moment. Just thought you might like to know that,lol!
Anyway that's about it for this month,short months seem to creep up on you and are gone before you know it.
March 2006
Sorry for the late update this month only I've been in hospital for most of it.
Originally I was took in for vomitting but on my 2nd day there I suffered respiratory failure,although all I knew was that I'd gone to sleep.The next thing I remember was waking up in intensive care with a tube down my throat connected to a ventilator.
The next morning I went for a tracheotomy as they thought I'd be on the vent permanently,but they soon noticed that I was doing most of the breathing myself.I was soon off the vent,on just humidified oxygen and spent a week in intensive care before being transferred to a ward.
Even though my speech was quite bad through MND,the hardest thing was losing my voice.Communication was a real problem,blink for yes,raise eyebrows for no and used a letter board to spell words out,what a pain!
Thankfully,now I'm back home,I have my laptop set up for speech so I can still nag and moan,lol.
It has been a very steep learning curve for both of us recently.We've had to get used to and learn how to do suctioning,changing trache dressings,changing trache tubes,maintaining the oxygen exchanger.My bedroom looks more like a hospital treatment room now.
On the whole,I was treated well at the hospital,after all they saved my life! The only problem I had was getting my position right in bed because the staff didn't know me and I couldn't communicate properly but we usually managed.
I will try and write more about my experiences when I have the energy.
April 2006
We've been spending most of this month getting used to our new routine and new carers,as we've had to bring a care agency in to cover the longer hours. All the carers have had to learn to do suctioning,tube changes,trache dressings and tube feeding and have their competency checked by the District Nurse.
It was strange at first having someone there and awake all night but I find it quite reassuring now,not that I wake up much now,I usually sleep right through.
I've just had my tracheostomy tube changed,it has to be changed every 28 days.It is usually done at the hospital but I had it done at home by the District Nurse,it's only a 5 minute procedure and usually painless.
I'm still feeling well,I'm having less suction now and can now spend longer off my oxygen now without it affecting my SpO2(oxygen/blood saturation) too much. So things are going well at the moment.
May 2006
Nothing much to report this month,things seem to be ticking along nicely.
I've had a couple of courses of antibiotics for suspected infections and I keep getting an irritation in my throat which makes me cough,other than that I'm quite well!!
Things have been nice and quiet,just how I like it,none of the excitement of the last two months.
Copyright © 2004 - 2006 Rob Marshall