Wednesday, March 09, 2011

Grinch effect

Yesterdays post was a little vague, I was still working my head around things I think.
But, I am still very hopeful with everything.
I have such huge huge respect for my doctors for listening to me, for being honest and for not giving up. I also have to give them such a big thank you for the research they do and the options that they come up.

Yesterday, my main surgeon, as in the top surgeon I see in London reviewed me again, after having seen me once a month for the last 3 months. Not only that, the professor, whom I originally contacted when I got my trach and who did my skin grafts for me last time, was there yesterday too. He is also the guy who is in all the news articles lately in regards to the way things are moving forward in this area. He has just gotten back from America where he was working on an airway transplant.

Anyway, they now agree with me, that things are not getting any easier, the original surgery is still blocking up all the time and is so my airway is still not wide enough for me to breathe through, no matter how hard I work on it. At this stage, everything that can be done has been tried. We have done the frequent surgical route, tried the medication route and I have kept up with treatments, nebs, humdifier and staying as well as I can, with such restricted breathing.

I think now, I am upto breathing, at best on about 40% airway. So think, maybe a milkshake/mcdonalds straw. Most people can cope with breathing through one for a short time, but add movement to it and it becomes to hard, so yeah.

So the next stage, is going to be a little bit of a step back, its going to be hard work again for all involved and the outcome is still a little unknown.

Basically, they are going to do what they did last August again. They want to open my throat from the outside,  to get a full view of my trachea. They are going to scrape away as much scar tissue as they can out and widen my trachea as much as possible again. They are then going to put a big strong stent in to hold it open as much as is possible. Because such a big stent is going to be used, I will have to have my trach put back in place.

It is going to be a big operation again, meaning a couple of days in ICU/HDU, back with catheters and tube feeds and knocked out for a few days on pain meds. There is talk of keeping me in London for about a week, then transfer me to a hospital at home for 3 weeks and back down to London for removal of the stent.

The aim, is to widen my throat as much as possible. They dont know if it will work or if it will help, but it is worth a try.

If this dosnt work, then the professor has offered to 'grow me a new bit of trachea' Now, I am not fully sure what that will entail or where I will end up with it. Its not something that I am thinking of yet, as I have to hope that each stage is going to work.

But, I have hopes, I have options and I have plan Bs.
I thought for a while, that this was how things were going to be, that I was out of options, and now, now they are listening and researching and I know, deep down, that I am in the best possible hands and the exact right time.

The hospital have gotten to know me and I them. The nurses run up the ward to hug me when they see that I am in, they sit and natter and although some of the nursing skills are questionable, I know that they all mean well.

After having the feeling of self doubt for so long, feeling like I was banging my head on a brick wall, people are listening and helping. And the gratitude I feel towards them is so overwhelming.

Perhaps its the grinch effect. After burying myself for so long away from everyone, now, I am swelling with love and my heart s growing two sizes bigger.
I have hope.

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