I didnt go to theatre, in the end on Thursday. turns out, I am too high risk for anesthtics to happily take me.
You see, where my old trach had come out, I was experincing some surgical emphaysima. This is basically where air gets trapped in the tissue between the layers of tissue in the skin. It gives pain and feels almost like rice crispies if you touch the area. Whilst not dangerous in itself, using the type of ventilation I would have needed for surgery, could have made the area swell up a lot more than they were able to deal with.
Although I would have been under the ENT team, ENT is a huge area and so it was decided that it would be better to wait until the airway specilaist team are in next week.
So, to counteract the waiting and make my airway safe once again, what they refer to as a mini trach was inserted. This is essentially identical to a trach, in the way it goes in, but the tube itself is only tiny, about 4mm. I didnt think it would give much relief, but it was instant that day. I could suddenly walk to the bathroom without feeling like I was running a marathon. Its strange, you dont realise how much you are struggeling with basic things until it changes.
Unfornatly, the effects were short lived and by last night, with the tube being so small, I was finding it harder to breathe again due to the tube being blocked.
So today, I have spent the day, just as breathless, if not more so, running constant nebs and adrenaline just to be able to breathe. But that air leak is now causing more problems again.
Where the area was mainly in one small place, it has now begun to creep right up behind my ear on my right side. To go with that, it has begun to spread right now my chest on both the left and the right. It makes any coughing extremley painful and leaves me with a constant ache. As a result, I am back on strong pain killers and not able to do much other than sleep. Even talking has become such a challenge.
I think and believe me it pains me to say this, but I need the mini trach putting back to a full one, at least for the time being. To allow me to heal again. But, as things are never that simple, there has not been anyone in from airway today that have been willing to take on the task. So I sit here and do what I can do and wait it out and hope that the further delay that this is putting on things, will not be to long. But every hour, the pain seems to get worse, breathing takes a little more effort and the energy required leaves me so hot that I am sweating like a crazy person. Of course, all this comes between bouts of awakness. As I struggle right now to stay awake for more than an hour at a time. Its like living in a nowhere land. Everything comes and goes in a haze.
My parents turned up as a surprise yesterday. I wasnt expecting it. I think I had been playing down how I was feeling to them. I hope I havnt shocked them to much today. I love them being here, even if it is whilst I am in such a daze. Treats from home. Things I was missing, without being asked. Last week i felt like I was losing myself in here. I have done nothing creative for weeks. No tastes of home, no nothing. But now i have my pencils back and home made sandwiches. This morning Dad bought me a greasy breakfast. Its the little out of routine things that make the biggest differnce.
There are so many people helping me through here. I owe them all so much. I could not do this without there support, yet words can not express the gratitude.
I am running low on my ability to survive right now. Not sure how much more my mind and body can come through intact. Something needs to give. I need to feel myself once again.
Even the joy of a shower, can not be experinced anymore. For the effort takes out the enjoyment. Sleep will come soon and then I can lose myself for another few hours. Of course, the hard part is keeping up my fluid intake. I may need to speak to them tomorrow about that. Sleeping so much and sweating so much, I can feel myself dehydrating. That will do nothing to help with tiredness.
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