Goals: serving simply as something to aim at

Mar 13, 2022

“A goal is not always meant to be reached; it often serves simply as something to aim at” — Bruce Lee

This week I’ve been focused on being able to swallow enough calories to sustain myself without being fed by a tube, so that I’d meet one of the conditions for my release home.

Early impasse

Early in the week, I had hit an impasse, finding myself unable to successfully consume puréed food, despite the encouragement of all the doctors, surgeons and nurses on my multidisciplinary medical team.

Unfortunately, everyone’s Ambition was outstripping my Ability. Like being told to eat a lamb rack with your hands tied behind your back, I wanted to eat all the goodness, but simply couldn’t get it down.

A better goal

My SLT specialist, Louise, quickly identified that some tweaked short term goal setting could be just the carrot I needed. (Not literally of course - I had proven already that trying to eat puréed carrot only ended in a spluttering, spectacular splatterfest, coughing some uninvited colour into the curtains).

Louise explained that in the short term, I’d be better off focusing on maximising calories, rather than the size, texture or substance of the meals. The video of my swallow function had shown I have good swallowing strength already, with low risk of atrophy. The issue was getting around the swelling of my palate graft, and other damaged tissue. That would slowly come down over the next few weeks.

So, we decided to switch the goal, from “eat as much purée as you can” (which I’d been chasing for a few days, without much success) to a new set of stated goals, about being able sustain myself without tubes, in terms of nutrition and medications.

The new plan

To achieve the new goals, I could simply consume nutrition drinks, although it would need to be quite lot more: I had been tube-fed 24 hours a day, and drinking only 1-2 bottles of Fortisip while tackling the purée. I would need to drink 10 bottles per day to prove I could maintain my nutrition and weight, sans tubes. The simple, measurable goal worked for everyone on my extended team. The nurses would come to deliver my medications or take my blood pressure, and ask me: “So how many bottles are you up to now? Good!”

The new plan takes a nosedive - requiring an adaptation

So, the next day I drank 6 bottles, until I hit a problem: due to an unrelated issue, the feeding tube in my nose had became so sore and inflamed it was almost too painful to swallow anything at all. By the next morning the site had become so painful the team decided I should have the tube taken out (via the left, sore nostril) and a new one inserted (via the right nostril).

Now, the removal of a nasogastric tube is a relatively routine procedure, and in simple terms is comparable to a PCT covid swab up your shnozz. There is no anaesthetic, just “a deep breath please and you may experience some discomfort - brace yourself”. However the key difference is that a naso-gastric tube is 100cm long, not 10cm. So, the naso-gastric tube removal is approximately ten times the pleasure of a covid PCR swab up your nose. I can also report that the subsequent insertion of the new naso-gastric tube was at least twice as unpleasant as taking the old one out.

The charge nurse looked me square in the eyes and said: “This is going to be a bit hard, but all we need you to do is just swallow the tube down as I push it down through your nose”. Hmph. Remembering Mum’s advice to not say anything unless I have something nice to say, I held back from miming a protest, despite wanting to point out to the charge nurse that swallowing was something more than a trifle for me at the moment, as she may possibly be aware. Difficult to mime that. Instead I took a long breath, and focused on getting my part of the job done.

Mercifully, the new tube worked. At last, it did not hurt to swallow. So, much to the surprise of everyone except me and possibly the Professor (who I suspect knew what would happen if they gave me a goal), the next day I quaffed 10 fortisip bottles by 2pm. I would have gone for more, but they had none left on the whole Ward. Someone went off to raid the supply of the orthopaedic ward, and place an urgent replenishment order for the next day.

The following day my weight had gone up, I drank eleven bottles of fortisip and ate a purée meal. Everyone agreed, it was time for me to pack my bags and head home.

In some ways, it was hard to think about leaving a place full of people with such dedication, professionalism and care. Not only that, but a place where the people somehow, amongst all the busyness, the stress, amongst the highest stakes of life and death per patient, and on top of that the challenging demands they face themselves from covid - how could they be so consistently cheery?

The answer of course, is that beyond all the goals, measures, charts, skilful techniques and tracking, the nurses of Plastics Ward have a little something extra: compassion. Compassion for each other, for the patients, and for themselves to enjoy life along the way in whatever form it comes, no matter what the circumstance. Even if it comes in the form of performing a midnight duet for a patient to give him a smile, and a happy lesson, or a reminder, to keep smiling. If these people were hunkered in a warzone, in 1917, 1944 or 2022, I have no doubt they’d still find a way to have a laugh, be a little crazy, and sing the odd song.

Hometime

On Saturday afternoon, I checked out of hospital. Maree picked me up and took me home to a very happy welcoming party of Mia, Bron, Mum and of course our excited puppy, Fred. In two weeks Fred has probably put on more weight than I have - but who’s tracking?

As a way of Thanks

My experience at Plastics Ward, and the approach of the staff there, has been an important lesson for me. There’s really only one way to thank them for it. So for Rose, Elbert, Krizza, Joe, Ravi, Ruthie, Eden, Anita, Elly, Wendy, Jen, Charlene and all the other staff at Hutt Plastics Ward: this is for you…