Struggles and some gory details…

At this point I was waking up every morning not able to open my eyes, as well as being cold, wet and covered in blood. It was pretty grim. I couldn’t breathe through my nose or close my mouth. I had blood and yellow discharge streaming out of my nose, and blood and saliva running constantly out of my mouth. Managing it during the day was a full time job and the lack of management during the night meant that I was a terrifying scene when I woke up. After the 6am drugs and check of observations (blood pressure, temperature etc.), I would treat myself to a shower in my private bathroom. I wanted to look half decent decent before my doctors showed up for their morning rounds, so this was the first step in my 2hr morning routine to get to that point.

I didn’t attempt showering until I got the last of my drains removed. From each surgery, I had new wounds, each of them had drains coming out of them, and little bottles for them to drain into. I had 4 in total – two from my shoulder, two from my neck. It felt so good when I finally got the last one out because I no longer had something permanently attached to me. I think it was maybe my second day in my private room in the ward (Wednesday) that I got it out. Then I was able to shower and wear my own clothes.

When I say shower, I use that word lightly. I had a big fluffy bandage on my left leg, a dressing on my shoulder and a trachy in my neck. This gave me a diagonal line that was ok to wash – my right leg, most of my torso and my left shoulder… Ok…

Double layer of plastic bags tied over my leg, shower head taken off the shower rail, towel over my left shoulder. Use the shower head to soak the towel over my shoulder, nice and warm. Turn the shower head around and point it over my one good leg, use the reflective back as a mirror and start trying to clean my face. When the towel got cold, re-wet, then continue cleaning face. I had a system going. (A few days later when they took my bandage off and removed the dressing from my shoulder I was allowed an almost normal shower and I hardly knew myself. I was having 2 showers a day at that point).

Then after the shower, I would start cleaning my nose, moisturising my face, putting my hydrocortisone cream on, more cream on my lips, cleaning my eyes… By the time the doctors came around I looked like an entirely different person from the monster I had woken up as. As well as looking better and thus feeling a bit better, this also gave me a great sense of achievement.

These are the gory details you totally want to know about this time.

* I found a way to get a tissue so I could put one end in my mouth and poke the other ends in my nose so that it would catch everything that was dripping for a few minutes so I wouldn’t have to worry about it.

* I tried a few different approaches but eventually settled on tying a towel around my neck every night to catch all the blood. I secured it with a little pair of blue scissors which was actually a clamp.

* I went through packets of tissues, paper towels, I dribbled on everything I owned (and washed my shirts in the sink and hung them up overnight), then I changed my approach and used a towel to try and catch it all during the day too.

* I was coughing all the time. Sometimes when I coughed, mucus came out through the outside of my tracheostomy and sat on my neck… I’m sorry, this is all pretty gross.

* My feed was making me feel nauseous, and that combined with the flap feeling so huge in my mouth, right at the back of my throat, and the fact that I was coughing all the time meant that I was gagging regularly, dry heaving.

* I had a horrible taste in my mouth. I hadn’t brushed my teeth in ages, and it had gone through two surgeries and had a lot done to it. The most I could do was soak a little pink sponge in water and put it gently in my mouth, making sure I didn’t touch it on the flap too much.

Ugh I think that’s enough for now. Thanks for listening.

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