Tuesday, 19 June 2018

One Second Every Day: June - Week 3

  • Monday 11th June - Early start to the day. Woke up at 5am. Patient transport arrived just after 6am and we set off for London. The stretcher was forgotten to be put on the ambulance so the transport crew set up a duvet and my pillow on the floor just in case. We took a pit stop at Peterborough Services for the loo and for coffee. My dizziness was getting quite bad and I fainted so we made use of the makeshift bed and my blood pressure settled down and it was quite a novel way to travel though not great as I wasn't strapped in to the crew member sat in the back with me called the control centre to make sure that a stretcher would be available for my journey home. One we go into London it was nice looking at the houses and architecture. We got to St George's Hospital around 1pm. I'd typed up an brief explanation of my different illnesses and care needs and wishes and the staff where fantastic in meeting those needs. They set me up with air flow pressure relieving mattress so I don't get pressure sores. I also met with the dietician so she got some meal ideas for me and brought some oat milk up onto the ward for me. The neurophysiologist also came and took me downstairs to get plugged up the the EEG and the we went back upstairs and connected me up to the monitor next to my bed. The Dr also came just to go over my medication and do a quick physical exam as part of my admission. The staff have been great in meeting my needs. There's been a slight hiccup in the arrangements as it was my understanding that I'd be here for 5 days but the paperwork was written down for a 3 day admission so they're going to try and find out what's happening. I bought myself wifi as essential sanity keeping and made the most of it doing some blogging and watching some catch up TV. The nursing assistant at bedtime helped me into my pj's as I was getting all tangled up in the wires and I settled into bed to sleep. Its a nice quite ward and my nurse was great in trying to make things not some sensory overwhelming for me.
  • Tuesday 12th June - The business of the ward started around 8am and my meds where sorted out. I've seen the Drs on ward round and the pharmacist and the neurophysiologist. Also waiting to hear from Professor Edwards to see how long I'm going to be here for. I've kept myself busy with my laptop and my sticker-by-numbers book that I found on Amazon. I've also seen one of the hospital chaplains today which was nice. I currently have a bit of stomach ache so I'm curled up with a heat pad and my laptop. This afternoon the neurophysiologist came and did some tests but they didn't cause me to have any seizures. So far its just an anxious waiting game. I'm quite tired so I'm going to wait for my 10pm meds ge inro my pj's and put on Harry Potter and head off to sleep. I'm keeping a daily hospital journal on so that will have more info on what I've been up to.
  • Wednesday 13th June - Got the news that I'm staying in for 5 days, so until Friday. Had my first tonic-clonic seizure so hopefully that will help with the video telemetry results.
  • Thursday 14th June - 
  • Friday 15th June - Home time! FINALLY got the EEG wires off my head, though I'm left with a ton of glue in my hair. Uneventful but long journey back home taking 7 hrs! Glad to be home but shattered. Liking the quiet of my own bedroom back but missing my profiling bed and air flow mattress which really helped with the pain, especially in my hips. Also missing the help I had from the nurses and nursing assistants and making me want to push for funding for care. Going to see if I can get and update from my Bluebird nurse next week and hopefully when I see Professor Edwards next month he can put together some supporting evidence for my need for care and hopefully my care notes from my admission will be read by him too so he can see how my illnesses affect me. Have a ton of glue in my hair left over from the EEG wires so my weekend's task is to try and get rid of it; failing that I'm off to the hair dressers! Came home to literally a box of mail; some birthday mail. More about my week in hospital can be found in other blog posts; I also have lots of other blog post ideas so watch out!
  • Saturday 16th June - Slept in until just after 1pm! Woke up more tired than when I went to sleep but must have needed it. Spent most of the day resting/napping. Very wobbly on my legs after being mostly bed bound since Monday. Put on a hair mask and Dad washed my hair for me so that should hopefully get the glue out of my hair; failing that I'm off to the hairdressers! Still have some unpacking to do but I've just been to tired to do much.
  • Sunday 17th June - Father's Day aaand... my 25th birthday! Had a lay in again and then woke up and opened some of my presents. I decided to eat and not go to church. In the afternoon Dad and I watched a film together. I then did some tidying of my room and a bit more unpacking, boring I know, especially when it's your birthday but my bedroom's gotten a bit messy. I then watched TV and had a nap as I'm still feeling quite tired from being in hospital and the l-o-n-g journey home. When Mandy got home from work a Naomi friendly birthday came out which was lovely. I had a early night as my spasms where getting quite bad so Dad helped me up to bed and I finished of watching the documentary about the Suffragettes as a distraction and went to bed.