As much as I loved shower days it wiped me out completely! And the thought of my foam neck tie being changed as it used to make me cough so much should have been enough to put me off but nope I loved them showers! Sometimes on shower days when mum arrived at visiting time I'd be spark out as it used to be a long strenuous session for me. But then as soon as I knew she was there she'd sheet up my chair and put a pooh sheet down ready for our daily UNO fix. Wait for my nurse to rotar stand me out to my chair, until one day my chair wasn't there! I remember someone coming into my room at night and taking it out to borrow as it reclined so someone could sleep in it whose family member was poorly overnight! What would I sit on now? A normal big hospital chair was given to me but was a lot firmer than my 'special' chair was, I had to sit on pillows with pillows under my feet as I was too short, even then I could only do a couple of hours in it, what a set back! My dad walked around the ward and found the chair but it was in a room with infection control so could not be removed without being cleaned. When my physio's found out they wasn't particularly happy and went and got my chair back and cleaned it, it wasn't removed from my room again from that day! Little things like this could really change my mood and make me quite down, looking back now it was only a chair sort it out woman!!! Speech and language came back to see me to try the cap again, 10 whole minutes I managed! Only another 23 hours 50 minutes and the tracheostomy could safely come out! I was starting to think this was becoming a permanent thing! But the talks of going to a neuro rehab centre no one would take trackie patients, well all except Putney, the other side of London! I was asked several times about going there but I declined due to the fact it was so awkward for visitors to get too, not seeing them daily would surely set me back and would not be fair to expect them to come up daily there as it would be at least 2 hours either way! I was told ENT would be coming back to see me again and was worried about having another endoscopy, mum was allowed to come in and be with me during this which meant her spending the whole day with me from 9.30am until 8pm although dreading the camera I was secretly pleased she would get to spend the whole day with me! Apprehensive as no time given when they would be coming all we knew was I was booked in and will be seen, better than the day mum arrived for a swallow test and was told as she walked through the door it had been cancelled even I was told an hour and a bit before hand! For me this just meant a full day with mum and a whole lot of UNO playing! So ENT came and went still too swollen to see, give it time for the swelling to reduce, again not knowing how long this would be was unsettling! It seemed no one knew what to do with me and my swollen airways and secretions! We called a family meeting with Mr Chandler, he was fantastic! All of a sudden things started to move, ENT came back I was put on a 2 week course of steroids, I had swallow test and now I was allowed yoghurt! Not exactly a crunch corner but muller light yoghurt, strawberry, toffee or peach! Yoghurt never tasted so good, but not the whole one (they were the small ones too!) 5 spoonfuls at first to see how I got on, once a day! They were going fine so increased to a whole yoghurt and then 3 per day! I'm not sure why but as soon as I was allowed these I didn't want them! Mum and Dad really had to fight to convince me to have them, then once I did I felt sick again, vicious circle! Mr Chandler said that if ENT were inconclusive again the next time I would have to go to Guys hospital as a day case as there were no ENT specialists at Kings to have further tests. I didn't want to go Guys, I didn't want to lose my place here at Kinnier Wilson! A little while later (I have no concept of how much longer after sorry!) I was booked for a fees test! Woo hoo, fluid and food even though it was covered in barium liquid, I would actually chew! I was wheeled down to X-ray after my shower day as it was a Wednesday and waited (mum again came in early and came with me) there seemed to be lots of people in there about 5 people behind the screen watching the tv things and the feeder lady that gave me stuff to eat and drink, I moved to the special chair after the parlava of no rotar stand or zimmer frame my speech therapist had to go and get one! Just red emergency bag at the ready, feeder gave me just barium fluid, swallowed fine, crushed up banana with barium - swallowed fine (even though it did taste a bit minging with barium I was chewing and swallowing! Check me out! Then a piece of digestive biscuit again dipped in barium by the feeder, not nicest but at the same time the best digestive biscuit I had ever had! They gave me the thumbs up, I could now eat mashed up food! Not a full portion mind but I could eat stuff and drink, better than just the 3 now boring flavours of strawberry, peach and toffee! When I got back to the room I had 2 cups of apple juice and a cup of tea! Although the tea was pants, rang dad to bring tea bags and ribena juice, scary in case I choked but also exciting! My NG feeding tube was reduced to ensure I wasn't OD'ing on calories! I'd lost 3 stone 7 pound by now, bit of a drastic way to lose weight though think I'll stick to weight watchers in future!
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