Part 24 - Me n my bonce

My first night in rehab, my aunt and uncle came to visit too! Mum had finished unpacking into my mini wardrobe and draws for me next to my bed and her and dad went for a "cheeky coffee". A nurse came and asked if I minded if someone played music as it was his last night! Thinking they meant through a tannoy system I agreed, 2 minutes later my bum holding sedgeway was there I was being taken to the day room to listen to his music, much to my aunt and uncles delight they were also coming! I arrived into the day room were his crowd were gathering. He played the guitar, I was waiting for him to chuck a tonsil or two but afterwards he explained that due to tubes he'd had down his throat he was unable to sing just yet! Was actually quite sad for him after that as he was really very good and could tell he was passionate about it! After the 2 minute performance I was wheeled back to my room. My aunt and uncle left and dad pulled my curtain round so mum could help me get ready for bed. Dad had figured out my bedside TV and phone so i was able to get my soap fix! (the amount we'd spent on bedside TV's now I think I could have bought a couple of plasma's!) There were 3 other ladies in my ward, 1 of which I still hadn't seen as she had her curtain pulled unfortunately I could still hear her though!!!! Another lady who was very nice and reminded me in a strange way of my nan she had suffered a bad case of flu and was left with Gillian Barre syndrome, very painful and unable to stand, and another lady opposite me very sweet and ended up taking quite a shine to my zimmer frame even though she had her own one which I must say gave me zimmer envy as hers had brakes too! She had also convinced herself I had triplets, that she asked me how they were every morning! Fortunately I was tipped off to agree with what she said as she would get very distressed if you didn't!
My first few days was pretty much filled with assessments, showing physio's, OT's, doctors and nurses what I could do, them seeing what I could do and I presume judge just what I needed doing help wise! I met my doctor who was about 7 foot tall, he was going to be my main contact for everything, after a little chat he told me he was off to Kinnier Wilson at the beginning of December, slightly worried I asked him what would happen to me when he goes, very nonchalantly he said well we will probably both be leaving at the same time! Woo hoo! He thought I would be out of here by then! I was initially told it was a 3 month programme! I was very surprised as I also found out my coordination was shocking now too, I couldn't grab my thumb with my other hand when above my head, but I could when looking at it! Most other tests I had mastered I think purely for the amount of times I had had them! Sliding my heel up and down my shin, touching my nose then the doctors finger, getting faster and moving their finger! Lifting my leg whilst laying down, lifting my arms, how far could I turn my neck! I became a performing monkey knowing what they would ask me to do next! On the Friday I was given a timetable, it was like being at school, what lessons did I have and when, when was my free periods?!

Part 23 - Me n my bonce

So the day I had been longing for for what seemed like months I was going to rehab! (And yes I did hum the song lots!!!) I was told transport was coming for me at 11am so mum was coming in armed with cards, sweets and biscuits I'd asked her to get each ward of nurses that had looked after me, she was geting here for 10am with clothes for me too! Woo hoo! It was also shower day (Wednesday) so OT's had come a little earlier to make sure I was a clean girl! I even managed to blowdry my barnet by myself too! Even if it was a big frizzy mess, is this really what we all walked about like before GHD's?! Wow! Anyways I was sat there waiting when I had a visit from someone (staff) who threaded my eyebrows for me! I really must have mentioned them a lot! Haha! I felt like a new woman and lost about a stone in hair weight! I was sitting waiting for my time, could not see my tv so did not know what time it was but felt time was going on, my OT was still floating about the ward and she popped her head in, she could tell I was getting agitated and asked if I wanted her to call my mum as I still didn't have my mobile with me, she called her and she was stuck in traffic as dad was dropping her in as so much to carry! 10:45 mum arrived it was like challenge Aneka to get me dressed, write cards and tags on gift bags! Then get in my wheelchair to deliver to everyone! It was lovely to go back in HDU, as I did as everyone was so pleased to see my progress, it was also nice to speak to them in my real voice and say thank you too! Then the nurses station of Kinnier Wilson ward, the ward that had been home to me for 68 days!!!! It was a sad but a happy goodbye as this was the next step to getting Dan back! Me and mum got emotional but whizzed round in my wheels and was back in my room, packed and waiting to go by 11:05am. No transport, eventually mum went to get a cheeky coffee and sandwich as my lunch was delivered. We ate our lunch and still no transport had arrived! What else could we do but play one last game of UNO of course! My transport arrived for me at 1pm, to my dismay with a stretcher bed! This was how I was taken to rehab on the bed, loaded into the van thing I wasn't the only one being taken anywhere! We had to wait for 2 more patients! They finally came, the transport guys were lovely really chatty and friendly. I even had a marriage proposal from the other patient on behalf of her son! Deep down I knew it was the eyebrows that did it! I made my apologies and explained how I couldn't marry her son and move to Nigeria as it was way too hot for me there and we carried on our journey, laughing as we went! Typically I was the last drop off! At one stop the driver and assistant had to carry someone up the stairs they left the door open and a child with no shoes and a bicycle appeared! No hallucination this was real! I finally arrived at my new residence Frank Cooksey Neuro Rehab. Although the transport guys were unsure where to take me, one ward they were told to put me in was like gods waiting room, I think the average age was 90, luckily mum said my name as the nurses didnt check, no wrong ward! Phew! I finally arrived to the ward, desperate for a wee now too! As I hadn't been assessed they wanted me to use a bed pan I point blank refused I wanted to use a proper toilet like I had been at Kings, they disappeared and came back with only what I can describe as a sedgeway with a bum holder! Similar to the rotar stand I held on and pulled myself up, the bum holders put down and I perched on these, was wheeled to the toilet, where I was allowed to have my wee in peace! Then pull the orange chord to be collected! I felt like the episode of Friends where Joey and Chandler arrived in Monica and Rachel's for the flat swap on the weird dog on wheels statue! Dan had arrived!

Part 22 - Me n my bonce

No tubes out my neck or nose now also meant I could see my niece and nephew who i still hadn't seen since my nephews birthday on 4th June! They were coming to see me at the weekend! The next few days I went from strength to strength! Such a boost finally having that damn tube out of my throat! Also knowing I was going to see 2 little people who meant the world to me! I got stronger and stronger at physio, walking out of my room and part way down the corridor, nurses would be so encouraging and have big smiles to see me and my zimmer frame coming down the corridor! Excited to see mum and dad and tell them just what I had done that day was a great feeling! I was still having trouble with my catheta it kept backing up and getting blocked! It was changed yet again and I also had a flip valve fitted this time to it to retrain my bladder as I had now had a catheta for over 3.5 months! The valve was ok for about the first 4 hours then just became blocked again, I was given no option the nurses removed it as it was now stressing me out too much, crying each time feeling like I had lost control of my bladder now too! 31 and wetting myself as well as ruining the sexy surgical stockings which there was now a national shortage of! (The shortage wasn't caused by me though!) I was really anxious, would I know if I needed a wee? Would I make it in time? The daytime peeing went great, using a commode in my room and it was left in my room overnight much to the disgust of the hitler cleaner manager that came round everyday! (Hey I suppose I finally had that ensuite!) I still had to be supervised getting to and from the commode and the nurses had to let the side of my bed down so I could actually get out! I managed to make it every time! Yeah me! One night I was awoken thinking I could hear something, well!!! An older fella from down the corridor had got out of his room and was trying to get on my commode (still with his jammies on may I add!) I pressed my bell and fortunately the nurses came apologised and removed him! Phew that was strange but funny looking back now everyone saying no xxxx, xxxx go back to your bed! Apparently he got out of his bed one day and he was asked where he was going? His reply.... To the other side of my bed! Now I know the beds were a little bigger than your average single bed but probably only by a fag paper! A couple of nights later he came and visited me again in the middle of the night just standing over me saying no no no no no like the man from Vicar of Dibley! Again the nurses came to my rescue!
Saturday came and I was so looking forward to seeing my niece and nephew, they were dubious at first staring at the whacking great big plaster on my neck! My nephew didn't say anything just gave me big kisses and cuddles! My niece on the other hand came in gave me kisses and a cuddle and straight away questioned DL (that's what they called me!) why have you got a plaster on your neck? Because I have a sore throat I replied! Well after that my zimmer frame, bed and wheelchair were so much fun it didn't really matter and it was just like we were at home! On the Sunday we had another family meal a KFC! It was nice to eat with mum and dad as we always had dinner together I missed it probably more than eating! Well ok maybe not more than eating but I did miss it! My neck plaster also had to be changed also on this day! And I take my hat off to the nurse that did this and will forever be apologetic to her! A normal plaster being taken off hurt enough, let alone a big square plaster with no pad/non sticky bit on it on the hole created by my tracheostomy! I may have spoke a little loudly with a little tap possibly to the arm of my chair! Wow that hurt!!! She also put my new plaster on for me, I hope that didn't need to be done too frequently I remember thinking!
As i now had no tracheostomy I was now able to go to neuro rehab but I had to wait for a bed! I was visited by Frank Cooksey which was part of King's as well as a private rehab in Blackheath! Frank Cooksey had previously accepted me but was waiting for my trackie to be removed now I had to wait for a bed, Blackheath were having a meeting the following day to see whether they would accept me. Days came and went and still no news! During an UNO session with mum and dad the sister of Kinnier Wilson came in and broke the news Frank Cooksey has a bed, scariest news - your going tomorrow!

Part 21 - Me n my bonce

Mum, dad and my other visitors quickly became pro lip readers again! Although it was frustrating when they didn't understand what I was saying! I used to say don't worry if they didn't and look the other way so they didn't see the worry or how upset I was if they asked me to repeat! Friday was ENT day and we was told its not definite you are on the list to be seen or going to be seen so don't hassle your mum to come up! Hassle her or not she was coming regardless, you try messing with her after her baby (in her eyes) has been to hell and back! Friday came my mute self and mum tried to carry on as normal but I was really agitated about what was going to happen! ENT arrived (so much for not being on the list!) and the dreaded briefcase with endoscopy!!!! Yes more camera intrusion! Camera down my nose again (strangely didnt hurt this time!) then in my tracheostomy, no swelling! The consultant was also baffled by my muteness and what had caused this! The speech therapists and ENT were all chatting a bit really like I wasn't there! Why don't we just try it I remember hearing! Oh dear lord what am I just trying??? They turned to me and said we think you're ready to have the tracheostomy out so we will try it if not we will put another one straight in! Mixed emotions of hope, worry, excitement and being absolutely petrified were going through my mind! What if they took it out it didn't work and they couldn't get the new one back in? To be honest I didn't have an awful long time to think about which was probably a good thing! But hang on where was all the equipment the other nurses had when it was changed before? Neck tie snipped OMG this was really happening! Mum held my hand, out came the tracheostomy the speech therapist put her finger over the hole "oh my that's so much better" I said! Tears from me, tears from mum, one very relieved ENT and happy speech therapists! They suctioned me then passed me back the yankeur (now with blood on) I nearly passed out as not great with claret or any other bodily fluids to be honest! I asked someone to take it from me which they smiled and did! Also my physio was in the room and he put the over sized massive plaster over the stoma site (trackie hole) then doubled it up with a foam flesh coloured cup coaster plaster! Right Danielle we will finish our rounds then came back to see you to make sure everything is ok! I never felt such relief! Even if I did now have to hold my neck to cough as the plaster made a farting noise where some air would escape! Tears of joys between me and mum and she passed my phone, I dialled dads number at first the penny didn't drop he thought I was mum! When he did I just burst into tears and I had to pass my phone to mum not wanting to blow me plaster off! 27th September 2013 you was a very good day indeed!!!

Part 20 - Me n my bonce

So now I trunkless and now eating and drinking! Still just the one thing holding me back - my tracheostomy! Just when and how would this be coming out! I felt like I needed a date to work towards! This tracheotomy  was pretty much coming to the end of its life so I needed it to be changed as they only last so long! More panic and worry! Will this mean more surgery? Anaesthetic? Will there be a hand to hold? I was told when it would be happening and mum and dad both made sure they were there that day! A doctor, an anaesthetist, a nurse in blue scrubs and a nurse in red (red to me is danger so made me panic more!) arrived in my room with equipment! Lots of equipment it looked scary! More stickers over my chest to monitor me, oxygen measurer thing on my finger and laid me flat with a towel rolled up under my neck to stop me mec-a-necking and to get better access! Being quite squeamish mum left the room and waited outside my room, dad was with me holding my hand. The doctor carrying out the procedure had possibly the worst bedside manner of everyone I had come across at Kings (maybe minus the one I hallucinated about and kept giving evils too) she didn't explain anything to me, my speaking valve had been removed so I couldn't talk, my dad the only one who knew how I was feeling and could tell I was distressed, held my hand and looked at me and explained to me everything they were doing! The inner tube taken out and a long stick thing in its place, my old trackie was taken out, felt strange in a good way! Then the other one (new one) put in I just remember choking loads, my dad was telling the doctor I needed suctioning and was passing me my yankeur and doing it for me in the end as she seemed a bit stressed! Then I had new foam neck tie put on whilst still coughing my guts up! Phew thank god that was done! Speaking valve popped back on, no no take it off! What's happened? I couldn't breathe out now with the speaking valve on which now also meant I couldn't speak again! Really frustrated and upset now I just cried with my mum and dad, why is all this happening to me? What was causing this? Nurses came and the sister, inflating and deflating the cuff just to make sure but I still couldn't breathe out at all! Maybe it's the swelling? But now I was unable to eat and drink again too as I needed the valve to eat and drink as told by speech and language therapist! I felt like I'd gone back a month and dreaded the thought of having to have another NG tube fitted! I was hooked up to fluids through my pic line as had been nil by mouth since the night before and was getting dehydrated! That night I also had problems with my catheter again, once my nurses had sorted everything it was about midnight and I was shattered, such a long day! I had to wait until tomorrow to reassess what had happened! The next day and still the same thing, I had the doctors and nurses baffled and myself in bits! My speech therapist came to see me and did so e swallow tests which was a success! Thankfully it was still safe to eat and drink though not talk! Because I didn't have my speaking valve on I couldn't clear my throat or chest properly so I needed a lot more regular suctioning! ENT were booked for Friday to come and see me with their camera again! Until then I would be mute again!!!

Part 19 - Me n my bonce

The nutritionist visited me weekly to see how I was progressing, I was told that if I continued the way I was my NG tube could come out! OMG! I'd grown quite accustomed to my trunk and pegging it to my gown (aka Peggy) my drugs crushed and given to me mixed in yoghurt to ensure I could take them orally as awful as it was was just another step to getting better and back to as normal as I was/could be!
2.15pm that Sunday, they're late! Visiting started 15 minutes ago! Then the familiar squeak of mums shoe, here comes pizza! So out I get in my chair with mum now as I can use zimmer frame, dad was parking the car! For the first time in ages me, mum and dad had our first meal together! Pizza never tasted so good! Oh my goodness no stamina I couldn't finish the smallest of pizzas, my stomach had shrunk which wasn't a bad thing I suppose! Then a gurgle and an 'episode' luckily by now mum and dad had the getting and setting up of a commode and helping me to transfer off to a t and within minutes I was where I needed to be! A whole day of UNO playing, finally we found a game dad couldn't cheat at too! My catheta had also now started to play up it had been changed once when i was in HDU as was hurting and I think it was changed about 4-5 times whilst in Kinnier Wilson, each time I had a dose of antibiotics to prevent infection but it also made me very sore! Needless to say I got a urine infection in the end! The medicine that I was given for that made me pee like an alien (not that I've seen alien pee of course! Even whilst on my spaceship!) illuminous yellow! I thought something else had gone belly up with me before one of my nurses explained it was the drugs! Phew! Plenty of fluids and it returned to normal eventually! I continued to take the crushed up drugs in yoghurt or dissolvable form and the nutritionist agreed I could have it taken out! Yeah, woo-hoo! Then apprehension, how do they take this out, is it another operation? No we just pull it out! So like Paul Daniels doing a magic trick after the t shaped plaster was off, pull pull pull and a big last pull my trunk had gone! As it was coming out it made me feel like I needed to sneeze, feel sick, cough but was literally only seconds and it was gone! Mum had nipped down to get coffees (code for gone for a fag) while this happened so was quite a surprise when she came back in! Today was also the first time I had seen myself too, in my camera on my phone I took a picture before the NG was taken out then again after! My god, my hair, my eyebrows! I looked a lot worse than I expected, not sure what I thought I would look like! People kept saying my hair had really grown, well if it had really grown then they certainly had bic'd it for the drain I looked like a parrot! But I'm sure I could do something with it! Every time I had a visitor after that day it was like a party trick of mine to wiggle my nose and smile - ta da! Sounds like such a small thing now but felt like a huge hurdle at the time! Still to this day I haven't seen a picture or reflection of me with my tracheostomy in or my wounds on my head, the day will come I'm sure just not yet!

Part 18 - Me n my bonce

So the eating fork mashable foods was going well I was now allowed to finish the whole portion! The menu at Kings was fab although sometimes ordering mac n cheese I got lamb casserole! Who cares it tasted good! Followed by a banana or rice pudding! Yum! But it was still no dominoes! Getting stronger with my physio's each day At the gym in the parallel bars I stepped together stepped, and again and again! I was walking! All be it I looked like I had a watermelon between my knees I was walking! And backwards steps to my chair! I was now also completing my transfers using a zimmer frame, a step up from the rotar stand! Gradually also using this with my nurses too! I had to make sure the foot part of my sexy stockings were rolled up being barefoot so I didn't slide along the floor, this only happened once I learnt quick! I still had my catheta so fortunately I only had to use the zimmer for transfers not sure i could do much more yet! Physio's seemed to come a bit more frequently one day he put my wheelchair at the door of my room, "fancy a walk there", my reply quite simply was a laugh and "you're joking right" nope he was deadly serious! With my gown doubled up to stop me doing a Frankie Howard and showing my bum and my wee bag hooked on my zimmer I stood, stepped slowly while pushing turned and sat in my wheelchair! I did it! Such an achievement! Off to the gym I went pleased as punch I had walked to my chair! Each time I went to the gym and each time it got harder and more intense! Boxing gloves? What the.... Ok I slipped them on, obviously I was no Frank Bruno but I had a good go after all i was only sitting and punching! Each time they made it a bit harder sitting on a wobbly board whilst doing it then 1 foot on the wobbly board, then the other! I would get tired very quickly and my Elvis legs would reappear a signal to sit! After resting my physio's asked if I would like to try and walk without my frame and with just those beside me! Did I! Course I did! They wheeled me in my chair to one end of the gym, I stood, held there hands and off I walked with them, nearly the whole length of the gym! Mum followed with my chair in case I got tired but I made it quick sit down then walked back too again holding on! My dad hasn't seen me in the gym yet so had arranged for him to come to a session. He had downloaded a song onto his phone and walked behind me when I was walking with the physio's eye of the tiger was playing! But I was far from being Rocky! This was just the type of thing that would lift my spirit as well as seeing other family visitors and my diamonds coming in and noting my shopping list from Vegas! I can't beat em or join em so they did it for me! Also bring in what every girl needs cake and chocolate cake at that! I seemed to now have a gelatin allergy so had to be really careful what I ate and drunk to ensure I stayed away from it! As long as it was marked with the vegetarian sign and wasn't nailed down I was eating and drinking it! And by now I had also progressed to real food, lumps an all! Every day I'd order custard for dessert no matter what the main meal was and mum would put in a piece of chocolate cake or slice up a banana in it for afters! Yum! My dominoes was now achievable and an order was now placed with mum and dad and coming Sunday! I'd looked on the Internet on menus I could see nowhere it said it contained gelatin! Get in!!!!