Guillain Barre Syndrome – my experiences.

By

David Russell

Page 8

I marked another day off the calendar. I now had two immediate milestone targets on my way to being discharged by the 17th. Trachea removal, and ENG removal. To do the first I had to prove I could breathe through my throat and not through the Trachea. I concentrated on learning how to breathe through my mouth and nose. I did this by removing the Swedish nose and placing my finger over the Trachea hole, attempting to suck air down through my throat.  My throat muscles were still slightly paralysed and the air passage was constricted by the ENG tube. The first attempts were disappointing. It was a strain to inhale sufficient air, but perseverance brought small improvements and after a couple of days I could definitely suck some air in down through my throat and into my lungs. After a few short intakes I had to take my finger off of the Trachea hole to allow proper breaths of air into my lungs, but it was a start. I practised all the time.

The ENG tube was the other challenge, but porridge and fromage frais was helping me maintain weight.

A week after the visit from the Dietician I was visited by the doctor. How was I doing? Would I like the Trachea removed? Yes yes yes please!

Nothing happens immediately, or so it seemed to me. It took another three days before another young woman doctor appeared, and announced that she was going to try to remove the Trachea. I wasn’t too sure about the ‘try’ bit ,but hell, this is what I had been waiting for. Even so I found it a little bit unnerving. Doubts started to run through me.

What if I had fooled myself, and the doctors?

What if I wasn’t ready?

Would I be able to breathe without the Trachea?

Would I suffocate?

As is often the case the thought was much worse than the deed. The doctor gave me a brief inspection, mumbled something like ‘this may hurt’ and then, simply pulled the trachea out. There was a loud sucking noise and suddenly I could breathe properly again. All the constriction was gone. Breathing was easy. I could hardly believe it. A plaster tape was placed over the now defunct trachea opening. ‘It would heal, by itself, in a couple of days.’ I could not have cared less. I was breathing, on my own, through my mouth, properly!.

Another few days were marked of my calendar. We were getting perilously close to my target date and I still had the ENG tube in place. I was eating, as much as I could, trying to put on weight. Breakfast was double porridge, orange juice, tea, and bread and jam. Lunch and dinner were disaster areas. It had been decreed that I would be on semi solid foods. So if the menu said Spaghetti Bolognese, then for me it had to be pureed. So imagine Spag Bol nuked in a liquidizer. Appetizing it is isn’t. It looked like a cow had passed by. The same happened for dinner. The menu had Roast beef, carrots, and potatoes. I had three dollops of brown, orange and white wallpaper paste consistency. This wasn’t going to work. I have always lived to eat not eat to live. I couldn’t suddenly force this un-appetising sludge into my mouth. So Ann came to my rescue. She prepared dishes at home and brought them into the hospital in polythene cartons. They were then micro-waved by the staff, then mashed by me to a consistency that I could swallow.  Ann also brought in chocolate mousses, and Hagen Das ice cream. I was being spoilt rotten, but I was maintaining my weight.