Well I had my surgery yesterday. What was planned for an hour surgery turned in to a 3.5 hour surgery and so I missed my team meeting. (clever)
Surgery was horrible, well coming round was. Probably the worst come around I have had in a very long time. I woke up feeling so sick, shivering away and in absolute agony. Once I could convey to them what was wrong they did there best to settle me. Gave me anti emetic drugs (anti sickness), morphine for the pain and put a load of blankets on top of me. By the time the ward came to collect me, I was feeling better, but wanted nothing more than to curl up and sleep.
I think I was back on the ward for about 10 mins when my parents showed up as the team meeting had ended. Apparently the district nurses and my parents need to be trained on how to suction and trachy care for use in emergencies or if im not well. They have booked this in for the 29th December. Im also to start going to the gym with physio. They want to put me through my paces and try to figure out if the breathlessness is now caused by my airway (which technically it shouldnt be as I have this trachy) or if its just a really low fitness level that has resulted from me not being able to breathe and therefore not moving around much.
So, discharge date I hear you ask. No real idea. One of the nurses suggested about 2 weeks, but that I am free to come and go as I please pretty much from the ward within reason.
Bear in mind all this was relayed to me while I was still pretty groggy from theatre. Then my thoracic surgeon came to see me. He said he had read the ENT surgeons notes and that there previous assumptions were in fact correct, that my airway had totally collapsed in on its self, hence why I had no voice. During the op the surgeon attempted to widen my airway and when I came around I had a little voice.
However, a few hours later and it had gone completely again. So its christmas eve and I have no voice. I have started walking around with a pen in my pocket and scraps of paper. My parents are so so bad at lip reading that it is unbelievable. There talking about booking into sign language classes just in case. As a way of communicating to me. But I really really dont want to lose my voice, so im putting my foot down for now and refusing to think about it.
The surgeons think that they have another idea to help my voice which they will try to put into place in the new year, but I have yet to discuss that with them. Maybe next week or more than likely the week after, after the holidays.
I was thinking earlier, you know, it does seem like I am having a pretty crap time and to be honest I am. But I'm still one of the lucky ones. I get to spend tonight in my own bed (first time I have slept all night in my own bed since getting the trachy, wish me luck lol)
And tomorrow, I get to spend the day with my family. So what I cant actully talk to them, but I can communicate in other ways and more so I can watch them. I get to enjoy a meal with them, give them presents, get some hugs and generally have a stressful but fun time.
There are so many people who wont get that. The rest of the patients on the ward, the ones still there, the ones who wont remember much of it as there on morphine drips, the ones who wont eat any christmas dinner as they have just started chemo, the ones who will maybe get visitors for an hour at some point during the day. Then theres the ones still downstairs in ICU the ones that wont even notice any difference in the day. The families of all these people whose christmas wont be the same and all the families who have lost someone recently, who will spend time on christmas grieving.
So sure, I do have sucky circumstances, but they could be a hell of a lot worse. Least I know I have a good team routing for me, looking after me, making sure my body does what it is supposed to do and when it misbehaves, correcting it.
I am so grateful for the team I have gotten to know over the last few months. To the nurses who take time out of their busy schedule to pull up a chair and have a natter, to the ward managers and sisters, who take the time to come for a bit of gossip with my family, to the physio's who have become more a friend than a physio, who have provided invaluable information and help, to the dinner ladies, who bring me goodies and put extra bits in the fridge knowing that I dont sleep well at night and sometimes feel hungry due to being up most the night. Only last night, I was touched by the kindness of the team. I wasnt due a dressing change till this morning, and the night nurses dont usually bother with dressings and such they just give out the meds and settle everyone down. But this one, one who has looked after me since the start, she knew I stayed up late anyway, so after meddies, she came around with fresh dressings and did it there and then, knowing she could take her time and do it much better than it would be done in the morning when the staff were more rushed.
Over the last few months (well 6) that team have become my lifeline. They have been my friends, my family, my careers. Always looking out for my best interest, always encouraging me to keep on going. I owe them a hell of a lot. Hey if you go back a few months to my last arrest I owe them my life and thats not counting however many other near arrests I have had and how many times they have noticed the signs and had me admitted to ICU.
I have had a lot of set backs this year, but I also have a lot to be thankful for. This christmas, Im just going to enjoy spending time with my dysfunctional family. That is all I need, my family at home and later on my family in the hospital.