36. Food

When I was nil by mouth, my PEG tube was attached to an all-in-one nutritious feed bag, for about 12 hours each evening/night. The feed had a brand name, but was just referred to as 'a bag of feed'. The connecting tubing was called a 'giving set', which I thought was a ridiculous name, and I took the mick out of it every time it was mentioned. The speed of the feed was controlled by a pump that beeped insesantly when it was done until someone came and turned it off. This could take a while. They would also pause it when I used a bedpan. It would be a woefully short pause until it started beeping at me again. Peer pressure... more like pee pressure. It was when I knew how to reach across and re-press pause to let me relieve myself in peace, that I knew it really was time to get rid of the machine.

Now I was in neuro rehab, Katie took over from Charlotte as my main speech therapist. She soon decreed that staff could give me half a pot of yoghurt 3 times a day. I tried to convince staff to just let me have the full pot. I asked if I could eat with the other patients at their mealtimes. One nurse just put an apron on me and let me make a mess with 2 pots. Because of the shakiness of my right hand, and having a choking risk, I was still officially being hand fed, but one student nurse used to give me the spoon and I never once spilled any down myself. Katie also tried me with water, which would make me cough most of the time. I always liked what I was given, and was keen to have more. I didn't particularly want food, I just wanted to eat normally.

Katie and Charlotte organised for me to have a videofluroscopy. This is an x-ray video taken whilst you swallow. It shows if any particles are going down the wrong pipe (aspiration). They wanted to do this before they tried me with foods of different textures. I'm not sure why this was necessary, as I wasn't having too much difficulty. I guess my laid-back attitude made them worried I had a lack of feeling in my neck, and so wasn't noticing I was aspirating. Personally, my main cause of coughing was keeping a straight face whilst being spoon fed.

I tried so hard on the day of the 'vf' to maintain calm. I was firmly instructed it was serious. I was taken to an x-ray room.  Both Katie and Charlotte were there, and a radiologist. Katie fed me foods of different consistencies, and little x-ray videos of me swallowing were taken, which Charlotte watched. I kept quiet as I was ushered into the room. I even managed to keep quiet when Katie appeared in a zebra print lead apron (to reassure kids, which I never understood as it wasn't a children's hospital). The food tasted tangy as it had a dye in it so it would show up on the x-ray. I managed the first few spoons fine. So far so good.

Then I sneezed. You could see this on the x-ray, so I saw my skeleton rocked forward and my windpipe expand massively. It was very educational. Then I burst out laughing, probably releasing all the tension of trying so hard not to. The findings of this endurance test was that a I was basically swallowing food particles fine, but a tiny amount of water leaked into my lungs. Afterwards, Katie trialled me with bananas, cakes, Quavers etc, and soon I was put on a soft food diet. (It tasted like normal food, just mushed up.)

I was still spoon-fed for safety, and had to drink thickened water. This was done by adding a powder, making it look, as my dad said, like wallpaper paste. It really wasn't as grim as it sounds, but did make water taste dusty and stale. In flavoured drinks  and tea though, it didn't have a taste, and in my view even improved the normally-watery hot chocolate. Now I was eating food, I could go to the breakfast club which the occupational therapists ran every week. The aim of this club was to achieve independence at breakfast, where patients made their own food, and did their washing up (lots of grumbling from the old men). I wasn't expected to do this, but happily sat there eating soggy weetabix, and insisted on attempting to do my washing up in a washing up bowl.

I also demanded that the dietitian stopped my feed. She cut it down, then stopped it all together. The relief; no more beeping. Soon my PEG tube was just used for liquid medication, and flushed with water to keep it clean. (I was soon given medication as shots to drink. Some tasted quite nice, but some tasted so bad I ended up sneezing it all over another patient, so was put on tablets.) Because I was drinking as well as recieving plenty of water through my tube, I was doing massive pees, which were commented on excessively. ("How am I meant to not spill this brimming pan down the corridor?")

I was on a normal diet (and feeding myself) by Christmas. Charlotte had said to me at the start of November that I'd be eating Christmas dinner by Christmas, she just couldn't promise what consistency it would be. I chose not to hear the last part. Hitting normal fluids took a bit longer, as water was hard to control in the mouth, but I got there. When my feed was stopped, I was put on protein-rich milkshakes for a while, as a precaution. I tell you, the hardships I went through.

Really not bad.