H and I both started of the day feeling quite overwhelmed with everything and not coping well. There is so much to do, especially for him as I can't speak yet and I've pretty much lost all my hearing. So he has to deal with phone calls and the door bell. On top of that I'm not fully mobile yet. We found out the night I got home that I don't have the strength in my legs yet to push myself off the toilet. Fortunately the hospital lent me a walking frame, and I can get that into our upstairs toilet and push up with that. But I can't do stairs unassisted yet and there are some small steps into our downstairs toilet. So H has to help me with those and then pass me the walking frame.
On top of all this I have to have my tablets crushed and mixed with water and then syringed into my stomach via the feeding tube. Plus the 6 daily energy drink supplements and water also syringed into the feeding tube. Each of these takes around 30 minutes. Eardrops four times a day, have to lay flat on each side for 5 mins while they soak in. Plus a lot of complicated mouth care procedures. Then there are my mouth stretching and swallowing exercises, and some gentle exercise round the house.
The feeding tube home care nurse came round this morning to change the balloon water in my RIG, She bought the news that she thinks I have a fungal infection in the tube. She is coming back on Monday and thinks she will need to change the tube.
Then this afternoon the district nurse arrived. Took swab of skin round RIG to test for fungal infection. Also changed my dressings. There are two dressings on my left leg. On the lower leg is the wound where they took bone, veins and skin for the jawbone reconstruction. Another dressing on the thigh where they took more skin. There was a wound on my left breast where they took tissue, but that's healed up nicely and doesn't need a dressing anymore. Lastly is the trachi site which is also healing well and has it's own special dressing. Every stage had to be photographed and then the pictures submitted online to the hospital.
Then there was the courier with the toilet seat frame with handles which I ordered yesterday. Should make life a bit easier but we're both too exhausted to put it together now. A friend emailed to see how I was. Bet you're bored she said. Chance would be a fine thing. Neither of us have had a minute to ourself and my new puzzle books remain untouched.
