After a restless evening of sleep I awoke, it was D-Day. It felt very surreal that everything we had worked for and focused on for the last 18 months was finally here. My family didn’t sleep too well either, it was around 4 am when the house started to bustle with noise from people having breakfast, showers and packing etc. I had attended my pre-op the previous day, being an international patient the majority of testing was done back in the UK and sent over so it was just a case of testing my blood type and running through some final health questions and informing me of what to expect on the day. We were up super early as my surgery had been brought forward from 12 pm to 8 am which suited me as it meant less time without food and fluids, two aspects that can play into a POTS flare for me.
Our taxi arrived at 5.50 am, it was still dark outside and the street quiet. The hospital was only a 5 minute care ride away from our rental which was ideal for Nick and my parents who would be travelling back and forth for the time I would be in hospital. We arrived at the surgery entrance and checked in. It was quite a large room sporting the obligatory fish tank for relaxation. Given it was so early the room was full of patients awaiting various surgeries that day. I was given my wrist band and then informed the surgery schedule had changed again and my surgery would now be 10 am and would head down to the holding ward at 8 am, we had 2 hours to kill and I couldn’t even have a cup of tea!! We sat at the far end of the room, we were all quite quiet, I could tell everyone was nervous, myself included. I felt a little weepy so attempted to distract myself with my music which as mentioned in previous blogs has become somewhat a saviour to me over recent years. I then became quite restless and fidgety and went to sit outside the hospital on the bench and tried to focus myself and my mind on what was ahead. I was very conscious not to become too panic stricken at this juncture and worked on the relaxation techniques I had been practising during the lead up to surgery. Dad came out shortly after and sat with me with the sweetest smelling coffee, I don’t even drink coffee now due to my various issues but when I smell it I can almost taste it. I proposed my dad and I pull up a taxi and make a run for it, as tempted as we were as no parent wants to see there child go through such a major neurosurgery we shed a little tear and decided doing a Houdini act was not one of my better ideas. We went back inside to wait, a nurse came over and explained that during my surgery my family would be in the relatives room and able to track the progress of my surgery with a unique ID number I was issued on screen and a staff member would come to give regular updates. Before I knew it another nurse approached saying the holding ward was ready for me, I had decided to take my mum to sit with me for the 2 hours before surgery. I gave both my dad and Nick a hug and told them I loved them. They both wished me luck and told me how brave I was. I could see they were both holding back the tears, as was I.
The holding area was essentially a ward with numerous bays and beds. This was the area where patients waited right before surgery and met with there surgeons, had IV lines put in etc. My allocated nurse was called Jackie and I could not have asked for a nicer nurse, so warm, bubbly and kind I could see why she worked with patients who were imminently heading into theatre she had just the perfect ammount of humour and warmth to add ease and calm to the proceedings. Jackie asked me a handful of health questions, did some final checks and explained Dr Sandhu and the anaesthetist would be round before my surgery. Jackie handed me a lovely gown, socks and hat to change into. Once changed another nurse came and placed an IV, I have notoriously rubbish tiny veins that often collapse so it was placed near the wrist which was a little uncomfortable but nothing major. Due to my POTS they placed a fall risk band on me and an allergy band for my allergies. Whilst waiting I started to cry, it was strange as I wouldn’t say I was in extreme panic mode which I thought would happen but I just felt overly emotional and frightened. Mum cried too and we gave each other a hug and again I asked if we could just leave and escape !! No-one was taking me up on this great escape !! I spoke to Mum about a lot of my worries and concerns, there is nothing like a mothers love and comfort no matter how old you are.
Dr Sandhu then appeared from around the curtain and shook both mine and my mums hand. He had just come out of a lower neck fusion surgery and I told him to have a rest before he started work on me to ensure his hands were nice and steady, we joked. Dr Sandhu explained the surgery again and asked if I had any questions. My main question for Dr Sandhu was the repositioning of my skull. Dr Sandhu then took my brace off and made a few markings on my neck and said he would see me soon and everything would be okay. I found him very calming and instantly felt more at ease. Next came the anaesthetist who was quite frankly amazing, we discussed my issues with anaesthetic and vomiting, my pots and how my heart rate may become erratic and blood pressure low and she instantly put my mind at rest. I told her my fear of being awake during surgery which stemmed from a previous experience whereby after my stomach surgery I was In recovery with the intubation tube still down my throat, my brain had woken up however my body hadn’t and I could not move an inch with no means to communicate as I felt like I was choking on the tube. The anaesthetist explained that with the nature of my surgery not only will she be next to me the whole time monitoring me but I will also be plugged into a navigation system that also does her job. She went and got me a scopolamine patch for behind my ear used to treat post surgery nausea and informed me she had just got out of a surgery whereby the patient had POTS. I could not have asked for a nicer anaesthetist. She asked if I wanted a pre- med before going into theatre as most people do to settle the nerves and so you’re not really aware of heading in, ever the control freak I declined and said id rather enter awake as I don’t like the whole semi conscious state situation. We filled in some more forms together whilst some students came and observed me and did a neuro exam. With the hospital being a University hospital it is full of students training and eager to learn. The two students would be in my surgery observing. They were both keen to talk about EDS and the instability in my neck.
It was then time to head down to theatre, I gave mum a hug and got myself properly into the bed. I was wheeled to the theatre door and at this point I said goodbye to mum, we told each other we loved each other and Mum had to take my glasses off me at this point which I didn’t like as I really can’t see too much without them. I was as calm as I could have been really, in fact I surprised myself at how calm I became. I think this also made it easier for my mum when she left to go and sit with my dad and Nick.
As the double doors opened into theatre although without my glasses my vision wasn’t the best I felt like I was in a real life episode of ER. The room was quite big, sterile smelling and I remember huge spotlights on the ceiling, big monitors and a bed quite high up in the middle of the room. The anaesthetist I had met came over to me and comforted me and another came over and explained some medicine would be going through the IV which may burn a little after they had run some saline through. I was asked to hold an oxygen mask over my mouth and nose and breath into it. I remember seeing a nurse at the bottom of the bed and thinking please wait until I’m out before you put the catheter in!!!! The last thing I remember was saying “please look after me”.
Unbeknown to me as I was out cold in theatre my parents and Nick were in the relatives room. It came up on screen that the first incision was made at 12.10 pm which meant I was being prepped whilst asleep for just short of two hours before any surgery began. This was to set my head in the right position to be fused, set me up on the neuro navigation system, position my head In the clamps and much more. A staff member came out to inform my family all was going to plan in theatre. My family just waited in the room throughout the duration of the surgery and as it was heading into the 5th hour they were wanting to hear I was out as they knew the expected time of the surgery was 4-5 hours and low and behold Dr Sandhu was stood before them in his scrubs and shook everyones hands reporting to my family all went as well as it could have gone. He informed them I was in recovery being woken up and a nurse would come for them when I was ready.
Now for me recovery was a blur. I remember briefly seeing the international liaison officer who came to check on me. Apparently Nick came down first to see me of which I cannot remember, he gave me ice chips and wet sponges and apparently I was giving off about a picnic blanket !!! My dad then came, again I don’t remember and then my Mum. Apparently Mum stayed with me the longest to try and get some medication down me as I couldn’t swallow but I have no recollection of this either. I am not used to medications so I think the cocktail I was on were really taking effect. I do remember complaining of a lot of pain and I couldn’t move my head an inch and a nurse explained I had a pain pump and when the light was on green to press it. After a good few hours in recovery I was transferred to the high dependancy unit, again I do not remember this or anyone being with me or this photo being taken below. I do not even remember any feelings of relief or elation that the surgery was over. Apparently at times I would mumble and then I would drift off again.
Then came five days on HDU………..