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Hopefully a quick update as I dont really have much to update.

A quick backtrack as my video was awful. Last week I ended up back in surgery, less than a week after my last one. Turns out the area of trachea above my trach has now collapsed. This means that I have once again had to ditch the speaking valve, making speaking a lot harder. You would be surprised at the amount of times you want to talk, when your hands are tied. To speak without a speaking valve, I have to block the hole on the front of my trach, while I speak, then uncover it to breathe in again. This means, when your standing washing dishes, and someone asks you something, you can answer. Or if you touch something hot and shout ouch, the sound dosnt come out. It gets frustrating. Although I am once again having some issues below the trach, so often I can get short sentences out without covering it. As they are short sentences, I tend to sound like that kid of the Malcom in the middle show.

Anyway. I am seeing my surgeon this week to discuss where we are up to and where we go from here. I spoke earestly in a email to him. There is a minimum of 2 years until the research for the surgery that may help me will be availble. Right now, with both ends of my trachea collapsing inwards, it would be a miracle at this rate if I make it to the 1 year mark, never mind the 2 year. I am getting tired, tired of surgery, tired of pain, tired of being tired. I think perhaps its time to review where we go now.

Half the time these days, the thought of leaving the house, makes me want to cry at the effort it takes. I have more bad nights than I do good nights. And today, virtually every breath I have taken has made a squeaking sound. A squeaking sound, like a squeaking toy, is from the air trying to get through a small gap. My lungs take twice as much effort to pull that breath in and out. It is exhausting.

And I know the lungs cant hurt as they have no nerve in them, but I am getting a heck of a lot of pain along the scar site from my lung surgery. To the point, where today, I even asked mum to give me some physio on that side to help it.

I have a feeling that this appointment, is probably going to be one of the hardest appointments I have had to face.

In other news, well not really other as its on the same tracks, but the world leading surgeon for tracheal transplants, the one who is supposed to have been making leaps and bounds and fixing my type of issues, was arrested last week for fraud. So yup, thats going to suck. Though, it does now mean, that I am definitely under the worlds leading surgeon for tracheal surgery.

I am doing everything right, I am in the best place and I have the best people caring for me. Other than that, lets just play on luck.

I have my niece here tonight, so some quality time and cuddles might be a good option.