Post Surgery Part II

I would like to make something clear before I continue this post; the nurses on the ward were lovely, in particular one of the male nurses.  I never got his name, but he deserves special mention.  He is an example of how little things in nursing make a huge difference, but (assuming) due to budgets and staff shortages this is not always possible.

From arrival on the ward he was friendly, smiling, and wanted to make sure I was ok - he always seemed to have time and I never felt like a nuisance.  But the stand out moment for me was the night I nearly passed out from pain and had to have an oxygen mask for the night and an ECG.  I was obviously distressed and by this point my family had had to leave after visiting hours.  He came over and sat by the bed and held my hand during the ECG whilst the others took Obs and worried about terms such as "Bradycardic."  In my pain-addled state I really appreciated someone taking the time to keep me company and calm.

On Wednesday 1st July I was deemed fit for transferral to the Haywood Rehabilitation centre - and my first shower.  I was a bit worried about my dressings, but the nurses said they would be fine.  One thing is for certain, once you have had to shower in front of two women, you have very little inhibitions left - now things that seemed major - such as shaving legs lest the world see your natural state - are very trivial.  I no longer give a damn what people think!  Surgery - leave your inhibitions at the door!

Sitting up for the first time for the journey was uncomfortable but nowhere near on the pain level before.  Originally I had been told I would be transferred flat on a stretcher - but by this point I realised that what should happen not necessarily will (when your hospital notes get lost within the same building and your promised bed disappears you learn to deal with unexpected).

Arriving at the Haywood was like entering a shining beacon of joy - I have never experienced nurses like that before - no one seemed rushed or too busy for you, the wards seemed calm and quiet.  And to top it off, they said that if I needed a catheter I could have one - and seemed quite miffed that I wasn't given one on the last ward.  Seriously, the Haywood was such a nice place it almost felt like a home.  I guess this could be due to that some patients can be there for months at a time.

Having settled in, my Baclofen nurses visited me and told me more about the surgery (the tube went into my spinal fluid first go!) and increased the dose, as I was still getting spasms which were pulling on the staples.
Over the next couple of days this was increased again, as post-surgery swelling can dampen the effects of Baclofen.

On the Friday they said they were pleased with my progress, and that I could go.  I asked if I needed a discharge note, and they said no, I was free to go if I felt ready, or if I wanted to stay longer I could.  The Haywood = awesomeness.

Post Surgery Part I

I left the last post just after waking from surgery, but I will start this one off from the few minutes before - from what I remember.

Waiting outside the theatre, the last thing I remember is being injected with what the surgical staff referred to as "Happy medicine."  At the time I didn't think much of it, and then they asked me to start taking breathes from a mask.  I remember thinking after the first two inhalations "This isn't really doing anything..." and then on the third breath "Is this meant to be..."

Next thing I know I am waking up in the recovery area with an oxygen mask on my face, very very confused - wasn't I awake just a second ago?  The next thought was "What is that weird pumping noise...what is up with my legs?"  Looking down at my legs they seemed to be much bulkier than normal and inflating and deflating.  The following thoughts; "Did something go wrong?  What's up with my legs?  What the hell...wait, I have a pump!"...I'm thirsty..."

It turned out that my legs hadn't been replaced by bionic ones, but that post-surgical socks had been put on with a pump type device, that I assume massaged them to keep the blood flowing to prevent blood clots (I had these on for the next 36 hours, and damn were they annoying).

After returning to my ward and becoming more coherent after a few hours, I realised I needed the loo.  Really really badly.  In fact, for the next 12 hours I needed to pee practically every 20 minutes - I can only assume this must have been a side effect of the anaesthetic as I have no other explanation for it.  However, after surgery I was very very sore, and the complete opposite of mobile.  The surgeon had used staples to close the incision (Which I found out later was because they are meant to heal better and scar less) - these proved to be very very inflexible, and pulled at the slightest

Assimilation Complete

It has happened.  On the 30th of July at 9.30 am I became fully assimilated - but it almost didn't happen.

After spending the morning of admission trying to contact the ward I was meant to be staying on, to make sure a bed was ready (as they had told me to do), it was only when we were halfway to the hospital for the admission time that I managed to get through.  And that was when the nurse (without any hint of sympathy or compassion) told me that there was not a for me.  Oh, there was a theatre slot for me, but because there was not a bed, the surgery could not go ahead.

After trying repeatedly to get through to the nurse that this could not be, that my surgery was happening TOMORROW, that I had waited for TWO YEARS for this, that I had been told that there would be a bed, I had to hand the phone over to Ben as I was getting near speechless with anger and frustration.

I nearly gave up, but my parents carried on driving to the hospital, and for the next 8 hours, the Battle for the Bed commenced.  My parents and Ben were near seething with rage over the situation, and we pretty much refused to leave until it was sorted out.  The receptionist was sympathetic, and called the ward manager, and my parents went up to the ward to have words whilst Ben took me for a calming cup of tea.

The next few hours were spent waiting to hear from the site manager, who was trying to find a bed.  We then levelled up to the day room of the ward I was supposed to be on, and spent a good few hours there.  The key issue was finding a ward that would take me, due to my "extra needs" - even though I can look after myself perfectly well, it would just be post surgery I would need looking after, but to be honest, anyone would need help after surgery!

Finally, after arriving at 1pm, at after 9 in the evening, a bed was found in the older wing of the hospital on a non-neurosurgical ward - it even had its own bathroom and shower!  By this point we were all well and truly knackered, and couldn't give a stuff what ward it was on, at least I had a bed.

Things brightened up, as I was told I was first on the theatre list the next morning, and so, at 9.30 am I was wheeled into theatre for the Baclofen Pump insertion - it was all a bit surreal to think that it was finally happening, after all the waiting, the phone calls, the lost letter, the trial complications - I was finally getting it.

Waking up from surgery was a very bizarre experience - wrapping your head around the idea that there was now a piece of technology inside me is hard to do when you are all foggy from anaesthetic.  I will cover post-surgery and recovery in the next series of posts though, I don't want to skim over these as I think these are quite important to document, I just procrastinate a lot!

One Week to Go!

The countdown has started!  Just one week to go and I will hopefully *fingers crossed* be having surgery.  This Thursday is my pre-op appointment for blood tests, MRSA swabs, and an ECG (if necessary).  I am working all this week, so that will help take my mind off it and make the week go quickly.

There is so much to get organised - for instance, a new bed, as the current one makes my Occupational Therapist cry as it is impractical (too low and also falling apart), plus the kitchen needs to be reorganised as the mugs are all on the top shelf and some of the dry foods need moving down too.

It's finally happening, woo!

MAJOR UPDATE

Ok, so Hell hasn't frozen over, nor have the Gods torn the skies asunder - BUT I have a date.  Yes, you read correctly, a DATE for the operation - 30th July THIS MONTH.

Yesterday after my ranty blog post I decided to force myself to make another phone call to my Baclofen nurse for an update.  She said due to cancellations everything had been pushed back and my surgery would most likely be in September.  Even more subdued than earlier in the day, I sent an email with the bad news to Ben.  Literally within seconds of sending the email, my phone rang.  It was the nurse calling me back.  She apologised, and said she had re-checked the diary, and that I would be having surgery 31th July.

This was followed by stunned silence.

Me:  ...What, as in, this year, July?
Her:  Yes, this July.
Me:  No way.  You're not joking are you?
Her:  No, that is the date (slight laughter in her voice).
Me:  OH MY GOD I AM GETTING THE PUMP.

After frantically phoning around every family member possible, I noticed an voicemail from the nurse saying that it was the 30th, not the 31st.  EVEN BETTER.  I then spent a large part of the afternoon wandering around the house in a state of dazed excitement.

Then Ben and I celebrated with delicious curry and TedTalks.  Awesome.

Still Waiting

With increasing frequency I have been asked the question "When are you having the surgery?"  Originally I would reply with an optimistic "in a month or two hopefully," but now I am considering responding with "When Hell freezes over and the Gods tear the sky asunder."

My patience is starting to wear thin.  Looking back when I started this blog, it was over two years ago.  Two.  Fracking.  Years.  And I have only recently made progress so far because it was I who did the incessant phone calling, chasing up letters, appointments, and waiting lists.  It was I who decided to make the enquiry about changing hospitals to speed up the process - no one mentioned to me it might be quicker until I joined a rehab unit and one of the nurses casually mentioned it.  I only changed as a last resort - a big decision since I had been with my original hospital since I was 17, and was like stepping into the unknown.

It is the constant phoning that is testing my patience.  I have said before, both places probably think I am a crazy stalker patient, but if I wasn't so persistent, I would have never found out that I was never put on the waiting list for a Baclofen trial, that the letter mysteriously went walkies in the post.  Don't get me wrong, the NHS is a brilliant thing to have, considering the fortunes I would have to spend in a system like the US, but good grief do they make you work for it.

My family and now fiancé are frustrated too - my mum and fiancé have been to most of my consultations, trials, appointments, etc.  He has put up with moving around finding The Perfect Place suitable for when the pump finally happens, supporting me when I went part-time at Uni, thinking that This Would Be The Year.  Thinking about it, everything has been in preparation for it, including the acceptance of the changes it will bring.  But stretching out the waiting process is horrible, bearing in mind my phenol injections have worn off, I am on no kind of medication, and my increasing tetchiness must make me a pain to live with.

So, this week, again I will be ringing up just to get a hint of a date, as I am just not going to assume "things will happen."

Rant over, but it felt GOOD.  Now when I go home I will probably vent further anger shooting some Banshees in Mass Effect 3.

Hotels and Accessibility

I thought I would do a quick post to kill time whilst on a long train journey.

The Ibis room in Glasgow I just stayed at was so close to being accessible, but failed for a very simple, fixable reason. 

The bathroom was excellent - wet room style with shower stool and plenty of grip bars. 

However, getting to the bathroom would be a problem for anyone with a wheelchair larger than mine (a Quickie Helium to give you an idea).  The gap between the bedroom door once opened, the end of the bed, and the wall was a squeeze for me, and therefore needs to be much bigger in order to accommodate a variety of wheelchairs.

That is pretty much it, and by changing the layout I am sure it could be fixed.