The first week
He can start the intense process of finally turning things around.
More importantly, I can eat gluten and dairy again. Our dogs can sleep on the bed. Halle-friggin-lujah!
In between shovelling creamy pasta into my mouth and snuggling our fur kids to sleep I check in with him. He is still spiking fevers and his blood oxygen saturation is not so flash. He is chock full of mucus which excites the physio students as they have something really juicy to work with. The plan: rest, eat, have two or three physio sessions per day, increase his exercise tolerance, and merrily infuse intravenous antibiotics.
The way that antibiotic blood concentration is monitored has changed. And no one understands it. We are given the protocol to read. It may as well be written in Farsi. From what we can tell it involves multiple blood tests, at odd times, for no apparent reason.
The hospital has decided not to feed Dave. Everyone else gets their meals and snacks but Dave misses out. He goes slightly barmy. One afternoon the dietician steps in and does something elaborate so that dinner arrives and we think she has fixed it. We celebrate!
The next meal does not arrive.
The second week
Time for a port needle change. There are always nurses ready to upskill to accessing and caring for a port. Education and upskilling is categorically necessary given that the supervisee and supervisor doing this particular port needle change do not know how to activate the inbuilt needle-stick-safety mechanism. A nurse gets a needle stick injury, Dave gets another blood test, my inner she devil roars.
Dave starts doing exercise and using muscles that have been lying dormant and steadily wasting away for the last three months of illness. His blood oxygen saturation rebels a little but some oxygen whips it back into line. A student physio has the unenviable task of walking multiple flights of stairs carrying Dave’s oxygen tank. Work and gym session, two birds and one stone, and all that.
We talk to key health professionals about the future. About what we can do to monitor and treat him more aggressively. About what our long-term aims are and the things we need to put in place to achieve them. Dave remains unflappable. I am decidedly flappable. As always, our most pressing priority is to work out how the hell to feed the bottomless pit that we all know and love as Dave. It’s a challenge on par with world peace. A Miss Universe contestant will be mentioning it any day now.
We discover Cob’s popcorn. It is, quite simply, a revelation. We buy shares in the company and devour multiple bags. We lament each piece of popcorn that falls to the multi-reistant-bacteria-ridden floor and rolls under Dave’s bed.
Dave weighs himself and hasn’t put on weight. We think the scales must be broken because he has been eating two whole trays of food at each main meal. And then we remember that they periodically decide not to feed him which evens out to zero net weight gain.
At the end of this week a handful of nurses start to remark “It must be nice to be going home tomorrow!” We are not sure where the false rumour started. We think it may have begun with the intern who makes us seriously question whether the selection criteria for medicine is working out for the patients. We hope he wants to specialise in surgery where his patients are unconscious for the majority of his interactions with them.
People ask me what Dave does in hospital to entertain himself. I have roughly the same odds of answering that question as winning Lotto. He doesn’t read, watch TV or listen to music. He doesn’t do puzzles or knit or colour in or blog. He isn’t on Facebook, he doesn’t drink coffee or eat chocolate or seemingly do anything very much at all as an inpatient. HOW DOES HE SURVIVE?
The third week
Dave escapes from the hospital for some breakfast because, you guessed it, no food turned up for him.
Dave’s lung function plateaus. And so begins the guessing game of whether he’s reached his upper limit or if his lungs are looking for a good excuse to avoid his vacuuming duties by extending his all-expenses-paid holiday at the Hilton.
I visit at lunchtime one weekend and suddenly have a craving for hospital potato mash. My dreams are realised when mash is on the menu for lunch! Dave gallantly donates one of his meals to me. So institutionalised am I that I gleefully tuck into his second hospital meal. I eat his green beans and custard. He eats my mushrooms and pears. Match made in heaven.
There are sunsets and sunrises. He watches a rain event stalk across the city. He dozes in the sun streaming in the foyer windows. We watch a helicopter land and take off.
His blood oxygen saturation sits and stays nicely within his target range.
He does another lung function test and it’s back right where we want it. His specialist tells Dave to get the hell out of there. Dave doesn’t need to be told twice. He collects his many and far-flung possessions, struggles down to the foyer like an old bag lady and is whisked home by our neighbour.
Home sweet home
The dogs are as excited about seeing him again as they were that time we drove past a bunch of cows wandering along the road.
He has a shower for the first time in six weeks without having to negotiate his accessed port and IV’s. Bliss. Sydney’s dam levels drop significantly.
He is well enough to cook dinner. A return to his usual level of functionality is the ultimate aim of therapy. Nailed it.
I give him physio. He has a thoughtful look on his face.
“What?” I ask.
“I’d forgotten how good your physio is.”
“Let’s try doing some vibes*.”
Dave laughs himself into a coughing fit at my attempt.
Well. I have other talents.
He needs to sleep. Hospital is a very tiring place and treatment takes a physical toll. I tuck him into bed. I offer to startle him awake a few times during the night to ease his transition from the light-filled and noisy ward. He declines my very thoughtful offer.
He sleeps well. He doesn’t even hear me snoring.
* “Vibes are a gentle shaking or vibrating of the chest whilst breathing out. This creates mini bursts of air flow which dislodge the secretions, moving them up and out of the airways.” – This explanation is courtesy of Cystic Fibrosis Victoria and can be found here: http://www.cysticfibrosis.org.au/vic/physiotherapy.