Storyline: Thinking in Autumn Colours
From the horse’s mouth
I can’t sleep. It’s 12:45 am November 17, 2021 and I can’t sleep. I did sleep. For about an hour and a half. Then I woke up to go to the washroom and now I can’t sleep.
What’s the big deal? Lots of people have difficulty sleeping. Well, in the past, so have I, from time to time. But you see, for the past three months my problem has been staying awake. Diana and I have written about my medical issues, so I’m not going to go over them again in detail, but suffice to say, not being able to sleep marks some kind of milestone.
I’ll back it up just a bit. Since the beginning of my current health challenge almost three months ago, I’ve not been able to swallow properly, and have been told that I risk aspirating food into my lungs if I eat. Or drink. Nul per os – nothing by mouth – was the order. The problem is that my left vocal chord and epiglottis are paralyzed due to a neurological issue. The doctors hope that the issue will resolve itself in time. They hope this because there’s nothing they can to do fix it, but they have seen this kind of neurological issue to be resolved by the body in its own time and figure that I have a good chance of recovering at least some of the functionality that’s now absent.
So (almost) all my food and drink has been administered by a gastric tube (G-tube) inserted just below my sternum into my stomach. My food has been a beige liquid containing all the vitamins, minerals, nutrients, carbs, fats and proteins needed to keep me going that’s been delivered to my stomach via an enteral pump. And I’ve been ‘sneaking’ clear broth for the last month. It started out as three teaspoons and has worked its way up to a cup – 250 cc – of flavourful broth. Either homemade chicken broth or made from a bouillon cube. And I’ve been very careful when consuming the soup. I’ve had to concentrate on every sip and swallow or risk aspirating some of the goodness.
“Where’s he going with this?”, you might ask. Patience, Grasshopper.
Three days ago, Diana and I decided to try a little experiment. Diana has been affected deeply by my loss of swallowing capability and, despite being an excellent cook (as long as she doesn’t have to follow a recipe), she’s been uninterested and unable to cook for herself. She realized that she has never just cooked for one, and much to her detriment is too worried about my condition to be bothered for herself. Sure, she’s thrown frozen vegetables and some protein into the oven so she has something to eat, but she’s really been uninterested.
On Sunday she mentioned that there were potatoes that needed to be used before they rotted. I volunteered to peel them for her. I’d peel enough that after they were parboiled some could be used right away and some refrigerated for later use. I jokingly said to her, “Cut a couple small and fry them. I’ll try one”. “It’s been a long time since I’ve done that”, she smiled. “Thanks for the idea.” The potatoes were duly boiled and left to cool. Shortly after, I prepared my pre-dinner meds and went to hook up my dinner to the pump. While I was ‘eating’ my dinner, Diana came to me bearing a small plate containing a couple of lightly fried potato slices. “Oh, what the hell. I’ll be careful.” I gingerly took a small piece, thoroughly chewed it and made a deliberate swallowing motion. As expected, the potato didn’t fully go down. I could feel some in my gullet and washed it down with water. And repeated the action until all was gone. It took a lot of water to get things down, but I didn’t aspirate and it was so good to be able to eat, no matter how little. So we did it again on Monday with the same feeling of pleasure and the same result. Tried again yesterday, and before I knew it I’d finished the two small slices of potato and they had all gone down without help from a bucketful of water. I was swallowing!
Now, I didn’t want to get too excited but we both consider this a win on my journey back to being fully functional. But it gives us hope that I’ll be able to return to normal eating and have the g-tube removed at some point. If that were to be the case, our hopes to be able to travel for extended periods in the camper van may be achievable.
So that’s why I can’t sleep. Or maybe it’s not. You see I had a cup of black tea yesterday afternoon. I haven’t had caffeine in over three months. And that’s the real reason I can’t sleep. Or so I tell myself.
Diana
I knew the black tea at 3pm was the culprit, but I also knew that he was excited about the possible progress. After my morning coffee and delivering his meds through the G-tube in the dawn of a lovely November day, I offered to make scrambled eggs with feta. “I was thinking of a poached egg, so why not”, says Alex. While he was “feeding” himself with a syringe I made the eggs and feta mix (it’s a very mild and soft Bulgarian feta, so I wasn’t warried about big particles chocking him). Well, they went almost as well as the potatoes, but still not quite the same. I guess purees and mashed potatoes (for now) will be added to the chicken broth which is a huge progress.
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