Part 9 - Me n my bonce

So when you have a tracheostomy you have to be capped off for 24 hours apparently! What is that I thought?! It's like a bottle top/cap on the end of the bit sticking out of your neck! My god was that hard to keep on, I managed 5 seconds which felt like forever! As I couldn't tolerate that I was given a speaking valve instead, let me try out this bad boy! Yep I sounded like Louis Armstrong or Nick Cotton! "Hello Ma" I said then sang we have all the time in the world! I have a voice, it may not be MY voice but my mouth was open and sound was coming out! Woo hoo! I got some time to be making up for here! But was taken off of it of a night time as the cuff of the tracheostomy had to be inflated to stop anymore gunk going onto my chest! Which meant it was safer but I would have no voice, I wouldn't let mum and dad go home before this was inflated again as I would go into crazed woman panic mode that I would choke! So after the handover each night back they'd come for another 10-15 minutes where I went into meltdown practically, not wanting to be left alone, make sure my cuff was up and then decide on 100's of things I needed doing all urgent of course! My ploy to keep them there longer! But they soon wised up to this, not that they wanted to leave but getting turfed out of a night by the sister wasn't a done thing apparently!
Physio's back and now bored with just sitting in my chair I want to skip or do something more interesting! They want me to stand up! They must think I can stand up! OMG I've got to stand up! S*** I have to stand up!!!!! In wheels an awful looking contraption, how an earth is that going to help me I thought! It looked like a massive flabelos machine on wheels with strap to put round your waist/bum! So shuffle onto my side and dangle my legs over the side, rest my feet on the foot plates, my physios strap me into the machine and pull my gown round to cover my bum a bit! Ready Danielle? 1, 2, 3 up thinking I can just stand it has now been about 6 weeks since I last stood it's hard work, arms and legs shaking, going dizzy with headrush but I did it! Check me out, I'm standing!!!! Quick sit I need to sit! Down I go, 2 more of these and that was my session over and me absolutely knackered for the rest of the day! I reward myself with a sleep, why not it's not visiting time, nothing else to do! Then the ward rounds by the doctor of the ward, he only grassed me up to my mum that I had been sleeping! Apparently he said I was only allowed an hour 2 tops during the day! Cor this was going to be a hard challenge staying awake! At least now during visiting I had my speaking valve on so I could talk to the visitors I had limited to so few. Hopefully by reading these you will realise I wasn't being nasty not letting people come up but before now there was no point as I didn't really know you were there properly anyways, plus I couldn't speak! Then when I could I would get very tired very quickly! Plus you should have seen the state of me, greasy hair again, tufts of hair at the front a tuft at the back and plaits! Not my sexiest look! Speech and language team came back every now and then and it seemed to be a different one near enough all the time, high turn over of staff or was they getting fed up with me?! I still could not tolerate the cap for longer than 10 seconds! I was never getting rid of this I thought!
Again it had been a few days since I 'made some room' shall I say to put it politely, anyone who has had a suppository or an enema will hopefully empathise with me here the most awful thing to have done, you have no control and feel like you are either going to take off or explode! The nutritionist had now introduced more fibre to be given to me through my NG tube this should help and get me away from them nasties, but no these 'episodes' continued until I was able to eat and drink again so I will not mention these 'episodes' again.
More people that had been admitted after me had been discharged or gone to wards, again thinking when am I gonna get my go?! Days and nights passed, turned into weeks in HDU (4 weeks I'm told!) still nil by mouth and actually wanting hospital food now, anyone that knows me well knows I'm a salad dodger but I was even craving a bit of lettuce, oh maybe some honey and mustard dressing, some cheese, a side of chips, a burger in the middle to share?! God I wanted a meal no more milkshakes through my tube I wanna chew! But it would still be at least another 4-6 weeks before that would happen too!