I want to make a post that says Yay I can breathe, walk, talk not have coughing fits. Alas, I am not up to that stage yet so I am unsure how this post is going to go. I have been trying to get online to write it for a couple of days but had major internet issues (T-mobile basically cut my dongal off because it hadnt been used in 30 days! So I had to get someone to phone them, then wait 24 hours to put it on, then another 24 hours because there system is crap and yeah. I now have internet, though it would probably be quicker to run home read the page I am looking at and run back gah)
So I have wrote out a few posts the last couple of days, well mostly written them in my head, and perhaps one on my ipod but still. Not sure how much of those I should post now as things change, so I am going to start at the beginning I think, so this maybe long. (sorry xx)
Mum and Dad were both comming with me this time, in light of it being classed a 'major surgery' so we got the train down.
So I got to the hospital at the said time (Yes I actually managed to get up, ready and dressed to be at the hospital for 7:30 am!! be proud) To then be told, that I am not on that ward, I need to go up to the next ward. Once there I was told, oh your last on the theater list, so just sit around, it will probably be about 2 when they come for you! Gah, so I didnt have to be up and in so damn early.
Anyway, I spoke to the surgeon and so forth and was preped for theater for 2, which they came, pretty much on the dot.
So I expected to come round a couple of hours later, with perhaps a fiar bit of pain in the recovery room and morphine top ups every now and again. What I wasnt expecting, first off was a social gathering up in the theater. (Darn if I had known I would have dressed for the occasion lol) Apprently a lot of surgeons had come to view the surgery, including some from America. Also Professor Birchell (The one who has done all the research into trachea transplant) was also there and came out to speak to me before hand (He had a yellow flowery bandana on that I had to try not to laugh at) Obviously there wasnt much convo going as they were wiring me up and had stolen my glasses so I couldnt see or lip read, nor talk as they had my arms too.
So anyway, went to sleep probably the fastest I ever have been. I usually love that feeling of fighting it and then just sort of going out, but this time it made me feel like my eyes were shaking so I just had to close them quick and with that I was gone.
Nope I didnt come around in the recovery and in pain (well I might of done but I had no recollection of it) The first thing I remember was being in the ICU and mum saying good bye to me as I was going to have chest physio and go to sleep. Think at this point it was about 9pm, so I had been in theatre and back for a while. I think I must have come around very slowly, as I dont really remember very much till sort of dinner time the next day.
Apprently though, I was my usual stubborn self haha. Firstly, I complained because they had put a NG tube in (through your nose into your tummy) and I wasnt expecting that. I hate NG tubes and the feeling of having stuff put down them really brings back old bad memories. But thinking on it, it was nesscary, I wasnt allowed to eat for a couple of days so they needed a way to give me my meds.
Then I complained about having a catherter, which I hate, but kinda expected. I had a load of blood in my lungs and it was ratteling around a lot. They kept wanting to suction it out, but I refused to let them (I am lovely honest) so I coughed a heck of a lot and body did I suffer for it the next day when even breathing was damn painful. They said I had to sleep sitting up and on my back, so I threw a temper and attempted to get out of bed to lie it down. Eventually, they agreed that I could go half down and lie on the opposite side from my grafts. haha Im such a good patient.
Anyway, I started coming more alert and awake and I thought wow, this is much easier than I was expecting, I am hardly in pain and this is fine, I can deal with this without even trying. Then they took away the continuous morphine infusion that was going into my arm that I hadnt realised and the pain set in haha.
So then I had to have some swallow tests which involved drinking blue food dye whilst they watch it go down on camera. (I was thinking of you all the way through Camcam) It was pretty painful having to swallow while I was still so swollen but it was also cool as the man let me watch the recording afterwards so I could see part of my trachea.
From the time I had had the surgery to the point where I was considered stable, they had been talking about moving me to another hospital. Every time they lessened the oxygen, my sats would drop into the low 80% range and my blood pressure was on a see saw, one minute high one minute low. So to be 'on the safe side' they decided they wanted me in a bigger hospital with access to more docs that they can consult on issues other than ENT.
So they ordered a high dependency ambulance to transfer me to Charing Cross Hospital. They loaded me into the ambulance and hooked me up to their monitors. Took one look at my oxygen levels and decided to blue light and siren it as they really did not want to get stuck with going downhill in the ambulance. (To hold the graft in my throat in place, they have put a closed stent in. Where before, my throat was very narrow above the trach, I could still get enough breath, to perhaps stay consicous from about 5 minutes should anything happen to the trach. With this closed stent, no air can get through at all, hence why I have no voice at all. So if anything happens to the trach, I have no other way of getting air.) So mum and dad had never done a blue light in an ambulance before so they were pretty nervous. It was kinda fun rushing through the centre of London with loud sirens and watching cars dive out the way. Though I was in a little pain. Morphine does not do your bowels any good and stomach cramps can be a bitch when they come on.
So right now I am in Charing Cross Hospital. I have no idea if I need to go back to the Royal throat nose ear hospital for my next surgery or not. I keep asking when I can get out. They tell me, once the stent is removed. Well when is the stent removed? Maybe in about 3 weeks, we shall see how your airway looks and take it from there.
I do have loads more to write, but the pain killers are kicking in and I am pretty warn out.
I think I got about 2 hours sleep last night. so today I have been the non compliant grumpy patient. ha. I refused to wear my anti clot things because they were annyoing me. I wouldnt get out of bed so they could make it because I wanted to sleep. I went back on the stronger pain meds as I wanted to sleep and not be in pain. and yeah, I am having a whiney day.
I shall write more about the good days and bad days tomorrow.