Sorry about lack of updates, so this will cover since the
last one. Things aren't getting any better, but more diagnoses etc.
Had a lovely visit from mum and dad on Saturday who were
driven up by their neighbour Bryan. Weather horrendous - all spray and
torrential rain on the journey. They brought me presents, including home made
ham sandwiches in case the food was grotty. I assure him that the food was good
and that everything I ate was recorded ( presumably because that's what happens
on a gastro ward.
The elderly Indian lady that had been in the next d lot
bed was moved ( I think back t.o her residential home) and was replaced by a
younger woman who had been taken ill with breathing problems on a flight. She
was visited later by her husband and twin daughters (around 3 years old) so
that brightened things up! They were bilingual so we had sentences of mixed
English and Swedish. The alcoholic woman in the bed opposite said that she
thought it was very clever that they were bilingual so young. duh!!! I didn't'
think it was worth the effort of explaining language development.
Lady in diagonal bed continues to amuse/annoy. We had the usual light
display ( she keeps pressing the light button rather than the call one).
"Susan SUSAN - I can't see - it's too dark. Put the light on" "
we can't pit the light on, it's the middle of the night". "What time
is it?" "Half past
three". " why am I awake at half past three?". " I don't
know, why are you awake?" " I don't know either. I'll go to
sleep now!.
When Sian and Julio were visiting, they came and said
that they had a bed at Oxford, so Sian packed my bags and I sat and waited.
This was about 6pm. Waited, with my bag packed and at the foot of bed. Time
passed. Discussion as to whether Sian and Julio would come with me to Oxford to
see me settled in but neuro ward is very strict re visiting hours and they
thought they wouldn't be allowed in. The transport ambulance finally arrived at
10.15 - they had come from Gloucester. I
shared the ambulance with a lady who knew it all and was quite chatty at
first ( which I could have done without, to be honest). But quietened down as
she felt worse during the journey. I was in a wheelchair, having been hoisted
in on the ward, which I think was better than a bed/ trolley. It was very odd as
the other lady was in her clothes, including coat, whilst I was in my hospital
gown, socks and a blanket wrapped round me.
We arrived jus t before midnight ( the ambulance people
didn't know which ward we were going to but t he other lady said it was on the
third floor). Up we went, through a deserted reception ground floor area up to
third floor where they rang the intercom but no one came. We decided that the
2nd floor ( neuroscience) was the best option (I'd already said that I thought
that was where I was going but other lady more confident). More waiting at the
locked ward door until someone came and let us in. I was wheeled to my room and
the nursing team (sister/ ward manager Ruth got me sorted and settled at about 1. No tv or radio and I hadn't unpacked
fully so no charger for iPad. Slept ok.
Sunday
Woke up . Blood sugars much better, but still having
insulin. Professor Turner, honorary consultant ( it's a teaching hospital) with
4 5th year students came to see me. Took a long time as students asked
questions and he explained things. Interesting. He ordered another Mir scan.
Julio and Sian came to visit and sorted out my TV and
wifi, so now have entertainment. Blood sugars still high but much better, so
still having insulin injections on top of everything else.
To much information warning - ignore next bit if you are
squeamish.
I have discovered that
being doubly incontinent is no big deal - it is dealt with
matter-of-factly by nurses and auxiliaries with care, sensitivity and with as
much of my dignity as possible. Very big nappies!!!
Ok - you can start reading again now!
We have to order the next day's meals on a sheet. More
choice than at GWH in that you can have stuff rather than sandwiches. I had
roast beef, mash, mixed veg and gravy and cheese and yoghurt for lunch and a
turkey salad and cheese and biscuits got supper. It is interesting that all
components are classified (vegetarian, gluten free etc). Relieved to see that
the orange juice starter is "balanced choice" ( as opposed to
"energy dense - ie lots of calories), vegetarian, gluten free and - most
importantly, easier to chew!
Visitors have to leave during meal times, so J&S took
themselves off to explore the atrium, shops and cafes some more. We were told
that the Drs would be happy to talk to them, but it didn't happy because it was
a Sunday - fewer doctors so they were very busy.
Started getting some painful spasms - because of numbness
not sure where it was other than lower back/bum area. Called the nurse, who
called the doctor and I was given some pain relief. As well as paracetamol.
Not much more happening - no physio and in bed all day.
Not a bad night's sleep considering. Sleeping on your
back is not right- I'm usually curled up or on my tummy.
Monday
What a busy day! Usual obs started at 6am and unusually I
was still half asleep.
Went for another MRI
this took 40 minutes as they wanted a full brain and spine. I wasn't
looking forward to it as the first one wasn't particularly good and I was
worried about being claustrophobic. However I shut my eyes and tried to keep
calm. They are very noisy, even with ear plugs in.
The spinal cord consultant (Dr Lane but I think her name
tag said de la something) came with 7 students. They are in their 5th year and
have exams on Friday, so were very attentive and questioning. I am now losing
count of the examinations I've had, but it takes up the time.
She hadn't seen the scan, but has explained that there is
an inflammation from my chest down, which is bigger than inflammations usually
are. They need to find the cause because the treatment will depend on the
cause. It could be an infection, or vascular ( not sure vascular what).
Steroids are the first treatment for any inflammation, but after that they may
do other things, including a flush which is like a cross between a blood
transfusion and dialysis. They flush out the antibodies that are over
enthusiastic and attacking the body and put new ones in. This could be just
once, or several times.
Then I had lunch - orange juice ( easy to chew!) followed
by mince lamb pie ( sadly energy dense) with boiled potatoes and mixed veg
followed by a yoghurt.
This was followed by the physios ( chartered and
occupational) who got me into the chair without the hoist. It was incredibly
hard work - they put a banana board under me and I had to pull myself over bit
by bit with my hands. I made it, but was exhausted. Physios decided that I'd
need a hoist to get me back into bed as the bed was higher than the chair. I
must admit I was relieved even if it was undignified.
More students - two this time. Also 5th year with exam on
Friday. Apparently they had been told I was good to talk to! Another series of
history taking, questions and examinations. As they finished, I wished them
well for Friday and was told that I may be the object of more questions in the
exam, but if so, we hadn't met before (which is what the first lot had said).
As I am compos mentis, and if I am still here on Friday, I may have more
students!
Visit from another neuro doctor ( they have 10on duty on
weekdays) who said they had seen some anomalies in the scan. There are some
areas of the brain affected as well. They'd seen this in the Swindon and had
thought it wasn't anything to do with it.
They need to do more tests and reading ( not sure if
that's a good thing or not!). There are
several possible causes of the swelling including genetic stuff, so they may do
some DNA tests tomorrow. Dad - what sort of arthritis do you have? The steroids
continue as that is the first call treatment for all causes.
Then told I was
going to be moved ( they had said that before as when I came the only room was
the video telemetry room that they use for teaching and for consultants/
professors keeping eye on patients. Hoist on to bed, nappy change and then
gathering possessions together. Easier this time as my table came with me. I am
now in a ward of 4, not near the window (but that's no problem as it's only
looking over the building). I miss the cemetery view when I was in the last
room on my own.
That's all so far - I am here with Julio, awaiting my
supper of corned beef salad and cheese and biscuits. My blood sugars are
settling down, so I may risk the ginger nuts that came with my cup of tea.
Debbie - keep the cake on hold, but I'm looking forward to it!
Another update tomorrow.
Love from Mum/ Boo / Bev
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