"All our dreams can come true, if we have the courage to pursue them"
The dates on the links below are when the updates to my autobiography / health diary
were completed. The updates usually cover the time period since the previous one.
There is overlap in what I wrote, as the health diary updates were originally written
for a different site than this one. There are some specific topics which are named
rather than dated, and these have been put in approximately when I was doing them
/ they occurred.
That was a very unique experience, Sylvie attending A&E and not being admitted, but
I can’t argue with decision as Sylvie was on top performing form when sat in the
waiting room. Sylvie definitely wasn’t hospital admission ill!
Once home, Sylvie was in her normal routine, but without an audience to perform for,
we didn’t really see the grinning amused Sylvie that had been there in A&E.
Within a week it became clear, that Sylvie was starting to struggle with phlegm around
the throat area and by Monday 26th February it was concerning and Sylvie didn’t look
100% herself, but it was variable, so Sylvie stayed at home that night. Overnight
Sylvie brought up a large amount of phlegm. She was brighter first thing on the Tuesday
morning but by lunchtime the carers were again concerned enough to call me down.
Once there I made the decision to ring the local doctors, and we managed to get an
appointment for Sylvie for 3pm that day. So we hoisted her into the chair and I wheeled
her up to Upperthorpe Medical Centre.
It was whilst we were waiting for the doctor, who was running a little late, that
all hell broke loose. One minute we were sitting waiting and the next minute when
I looked at Sylvie her lips were going blue and her face was twitching, like she
was fitting. I called out to the doctors receptionists who quickly got a doctor and
other medical staff to Sylvie, before ringing 999.
The doctors quickly took Sylvie’s stats and the oxygen was registering in the 50s
rather than the high 90s, so an oxygen mask was bunged on. Whilst this was going
on other people were moving screens round Sylvie, for privacy. They also cut Sylvie’s
dress so they could attach the defibrillator pads to her in case of need further
down the line. All this time they were trying to get a temperature and failing. It
turns out that Sylvie was by now very cold, so one wasn’t registering.
Then the paramedics arrived, 5 of them, in an ambulance and 2 paramedic cars. Quick
response was very quick response on this occasion. By the time they arrived Sylvie
was stabilising and her oxygen improving, going up into the 70s, but still no temperature
was recording.
Shortly thereafter Sylvie was lifted from her chair onto the ambulance stretcher,
the 5 paramedics and me using the sling under her in her wheelchair to accomplish
this. Sylvie was then taken out to the ambulance whilst I, feeling pretty shaken
up at this stage, took her chair back home, before going up to the hospital with
her drugs and care plan.
I could feel the nervous tension bleeding off, tension brought on by something new
and very serious. I’d never seen Sylvie twitching and blue like that before, we had
been at the most serious place since her heart attack in 2018. I was just glad it
had all happened in the doctors reception area and not at home, as medical help was
there so much quicker.
It seems that what happened is that phlegm blocked Sylvie’s airway meaning she was
struggling for life giving oxygen, which brought on the blue lips and the twitching
face, rather than any kind of seizures.
Once I got to A&E Sylvie was in Resus, and the paramedics were just leaving. They
told me Sylvie’s temperature had improved whilst she was in the ambulance, registering
34.something if I remember correctly. This rise in temperature wasn’t to last, so
on went the bear hugger again as they monitored all her stats, balancing blood pressure
sustaining fluids, warmth and all other needs. This was all under the supervision
of senior consultants and anaesthetists as the junior doctors were on strike.
By late evening Sylvie was well enough to be transferred to the Acute Medical Unit,
Firth 5, where she was for the majority of the night, before being transferred to
Vickers 4. I visited for a few hours that morning and whilst Sylvie was constantly
on Oxygen, her reliance on it dropped. In the afternoon after I left, Sylvie’s condition
deteriorated and she had the doctors, nurses and chest physiotherapists buzzing round
her. They managed to stabilise Sylvie’s condition, and move some of the phlegm that
was being problematic. After which I was rung. The prognosis I was given was that
it would be a hard fight for Sylvie to pull through as she was very poorly.
When I went in on the Thursday morning the doctor I saw was pretty pessimistic. The
point being made was, that due to sepsis, the chest secretions and her general condition,
due to MS, recovery may not happen this time. That Sylvie’s condition was very poorly
and it could turn worse at anytime. This made me take the unusual step of letting
Emerald’s school know how things were. I was at the hospital all morning until just
after lunch. Sylvie was on full oxygen but she seemed to be doing ok, subject to
that very big proviso warning from the doctors. A proviso I guess I still underestimated,
even though for the first time on any admission ever, the doctors were talking about
getting the palliative team involved.
Underestimated, as I was slightly surprised to get a doctors phone around 7.30am
on the Friday morning telling me that I should come in sooner rather than later.
A few priority phone calls later, I drove over to the hospital and there was Sylvie,
not a lot different than before to my eyes. Had the doctors over reacted?
This is when the facts were laid bare, the antibiotics weren’t working and the secretions
on Sylvie’s weren’t budging enough, that the outlook was such that active treatment
like chest physiotherapy was unfair to Sylvie. That we were really in palliative
care territory and the likelihood of Sylvie pulling through was very slim, that she
could go in hours or could last days more, but more likely than not she would not
make it.
I’m pretty sure Sylvie knew that she was very ill, terminally I don’t know, but very
ill definitely as she didn’t want me to leave her, which was unusual.
Actually on that last full day Sylvie was good mentally, probably due to all the
oxygen support. She was communicating quite well. Mark, our cousin who called in
around lunchtime, commented that she was better than he thought she would be. Sylvie
also interjected from behind the oxygen mask, into conversations I was having with
the other ladies in her bay area. I particularly remember her mentioning Galapagos
when holidays were mentioned. She also really enjoyed a voice message sent by her
good friend Alex, it made her emotional, but in a really positive way. Thank you
Alex for that message to Sylvie, I think it really made her day.
As I said before Sylvie didn’t want me to leave, even after I had been there 6 hours
or more, she kept saying no when I asked if I could leave, that was until I said
I had to leave to check on how Emerald was doing, that was when I was allowed to
go, with me saying see you tomorrow. Sylvie the mum, overrode Sylvie the very ill
lady!
Inconceivable really is a great word for the fact this actually happened and the
strongest woman we all knew is no longer with us as a major pain in the butt, as
someone who made us laugh, or as an inspiration.
It’s not the right word for the fact that it could happen, but that it did!
God dang it, how does one start this update!
I guess the only way is to state the bald truth as Sylvie would have done!
That Sylvie Wright died on the morning of the 2nd March 2024.
SYLVIE
WRIGHT
REST IN PEACE
2nd March 2024
Flabbergasted, another great word Sylvie would have been proud to use.
The truth however is I think the vast majority of us have always known that Sylvie
was very vulnerable to infections and each hospital admission could be the last.
Her strength also meant that this knowledge was balanced by the fact we also thought
there was an outside chance that she’d live for, wouldn’t have been totally surprised
if she’d lived on for, another 10 years.
In the end Sylvie’s death was the result of one too many infections in too short
a period of time.
I doesn’t make it any easier, and it’s difficult at times to comprehend, but it’s
reality.
The admission to hospital that was to be Sylvie’s last was the second since her last
website update at the beginning of December, and we also managed an additional trip
to A&E in that time.
Lets go back to December. At this stage Sylvie was in a normal pattern for her over
the last year to 18 months, with a lot depending on her mood, devilish or nice, and
how much sleep she had gotten. Also the impact of infections hanging around was always
there to change things.
As the month progressed it became more obvious that Sylvia had a phlegm rattle that
was probably slightly increasing so as a precaution we got the local doctors out,
on Christmas eve, to try and avoid holiday complications. The doctor’s diagnosis
was that there was nothing wrong with Sylvie’s measurable stats but that there might
be a very minor noise when listening from behind, so as a precaution she prescribed
some antibiotics. These antibiotics had a positive effect over the Christmas period
and led to a period at the beginning of January when Sylvie was in very good form
mentally.
At the end of December we had a positive visit to the spinal injuries clinic where
Sylvie had botox injected into her arm and hand muscles to try and loosen the muscles
and ease the muscle contractures that severely effected Sylvie.
Naturally Sylvie’s good form wasn’t to last as another infection closed in, leading
to Sylvie going up to hospital late on the 9th January. The carers had been concerned
all day, and it was as Yvonne came on shift to prepare Sylvie for the night that
things seemed to take a turn for the worse, with less communication and more confusion
from Sylvie. Yvonne therefore called me down and once there I decided to ring 111.
As usual 111 took time to decide anything as Sylvie is not a straight forward tick
box case. In the end they decided to book an ambulance and said it would likely take
an hour or more to arrive. Did it? No! It was arrived in about 10 minutes, whilst
I was still on the phone with 111. The paramedics checked Sylvie over and were happy
with most things, but they couldn’t get a temperature which meant they made the decision
to take her up to A&E.
Once Sylvie was in A&E, they still couldn’t get a temperature and it was decided,
as the paramedics had suspected, that this was due to her temperature being hypothermically
low. When one’s temperature gets down to around 32C many devices can no longer register
it. Sylvie was quickly placed under a bear hugger blanket, which is an inflatable
blanket which warm air is pumped through, the warm air helping to raise the temperature
of the individual under it. It did indeed raise Sylvie’s temperature and things progressed
well enough for her to be transferred, around dawn, to the Acute Medical Unit, Firth
6.
I was therefore surprised to get a phone call early on Thursday 11th informing me
that Sylvie was on a lot of Oxygen and struggling due to having phlegm on her chest
and that they’d called in the chest physiotherapists to try and help shift it. I
was busy that day and as it only seemed concerning and not that Sylvie was in any
immediate danger I didn’t go straight over to see her. I arrived at the hospital
after 3pm, by which time she had improved dramatically. The chest physiotherapists
came again, when I was there, and by the time they left Sylvie was off Oxygen support
having been on maximum oxygen that morning. At this time Sylvie was transferred to
a respiratory ward, Hadfield 2.
Sylvie continued to improve, but I was slightly surprised when they discharged her
as early as the 19th January, but as you never knew how long a particular stay in
hospital would be for Sylvie it wasn’t overly concerning. Another slight surprise
was that Sylvie’s overdue nephrostomy change unusually wasn’t done during the admission,
especially as a urinary infection was the suspected cause of the admission, but left
to Urology to rebook after discharge.
It all added to impression, of what I would call a slightly lax ward, maybe that
is in part the wrong word, but definitely one on which patients were treated more
as throughput and less as people, compared to our normal experience. An impression
not helped by the fact Sylvie came out with a huge bruise on her tummy, where she
had the bladder pump internally and probably caused by less than careful handling.
The District Nurses made sure they took photographs as soon as they saw it!
So did Urology quickly rebook the nephrostomy change? Actually no, because after
a week I rang them, and made sure it was booked. I got the impression she was on
a priority list, but who knows how long it would have been if I hadn’t rung. The
exchange was done smartly on the 1st February, an extra day to the normal schedule.
On Saturday 17th February, Tony was concerned enough about Sylvie not eating normally
to call me down. It was one of those occasions where I would say it was borderline
if Sylvie needed a doctor. To be safe I rang 111, after 35 minutes their advice was
go to A&E, which is what we were thinking anyway. We ended up in A&E around 6pm and
Sylvie was quickly triaged and with Sylvie still in her chair we were parked in a
waiting room, whilst they did bloods etc.
It was whilst in the waiting room within A&E that Sylvie perked up and started telling
jokes to and being chatty with the others also parked there. As usual Sylvie’s stories
managed to one up everyone else's. Eventually Sylvie was transferred to an A&E cubicle
and then onto a bed so they could do the X-rays and ultrasounds more easily. By the
time the bloods and scans were back it was after 11pm, it was at this stage they
advised non-admission as there wasn’t anything obviously wrong beside slightly cloudy
urine and the odds on her catching something else, if admitted, were on balance a
greater risk than going home as she was. We arrived home after midnight, when Yvonne,
graciously working late, prepared her for the night.
Proud mum
SYLVIE
&
Emerald
on
Emerald’s 18th
A see you that would never happen as I was rung just after 7.45am on the Saturday
morning by the sister of the ward, who told me that Sylvie had just left us for good.
Sylvie died shortly before this and it seems that it was peaceful in it’s own way
as the nurses had not been rushing around her expecting it at any minute.
I got the call shortly before I was going to set off to see Sylvie at the hospital,
but timings meant I was not going to see her alive that day.
The first person I told was Emerald, who came over and gave me a hug. Talk about
a mature, thoughtful 18 year old. After that I rang Tigga so Emerald would have someone
to talk to if needed whilst I headed up to the hospital.
There Sylvie wasn’t, though her body was, but the lady she was, was gone.
Rest In Peace, Sylvie
Sylvie, rest in peace, not sure about that! She’s more likely telling jokes, riddles
and getting on with whatever is after death, at full pelt.
I guess I could continue this update with other news as Sylvie would have done, about
how the refurbishment of Steve’s bachelor pad is coming on nicely, though with the
substantial extra expense of putting in a new fire escape. How we’re continuing with
the planned repairs and improvements at Sylvie’s, which she’d been told about and
allowed, and includes new windows, but that is all really by the by now and incidental.
There may be more to say in due time, but for now I think this is enough, though
an update including everyone’s memories of Sylvie will definitely follow.
Keep on Keeping on, Sylvie, wherever you are.
Matthew Brown
5th April 2024
