Sometimes crises aren’t loud or newsworthy.
They’re quiet and insidious. An intake of breath, an apology.
My heart pounding in my ears louder than the VTech Toot Toot toy that RD presses over and over. Louder than his peels of laughter at the power of his fingers on a button.
A simple lifting of a vest. A snake of redness etching up from a dialysis line.
It’s only been two weeks since those conversations. Three weeks since this new line has been fitted. Everyone in the room knows this is not good. I feel the hot burn of vomit in my throat. Try to shush the panic, remember, no assumptions, question, question.
We sit and wait. There will be no dialysis today. We will not be going home today. RD is oblivious, on glorious form. No temperature, no signs of illness. No dramatic ambulance ride. I’m not sure how to phone wolf and tell him; only four days away from hand in at the end of his first year of his PhD. Three days away from Father’s Day his son’s life is being quietly threatened.
I channel my five year old self and phone my parents first, test out sharing the news. Quell the panic until we know what this really means. The surgeon arrives, confirms that the only way to fix this is to take out the line. Slight crumple, deep breath. But offers a little hope: RD does have another vessel if we wish to try again.
It feels like a life vest made from barbed wire for now, given that RD has had two dialysis lines placed in ten weeks, eight weeks of dialysis, two serious infections and one undiagnosed virus with serious anaphylaxis. That’s not good odds.
I just know I’m getting taken to the room with the bile yellow walls and the box of thin, inadequate tissues. I phone wolf, hear his breath leave him. “He’s got another line infection” enough to transfer the jolt of pain through him.
The last few days are too raw still. Too many conversations to unpick. The option of fight or flight has hit wolf and I differently. We look at each other wanting to come together across this gulf.
I can see that the recommendation of the doctors may not be too pessimistic. That we are hitting too many hurdles. Putting him through the pain of dialysis: the insertion of another line, the management of it when actually it is a law unto itself in RD’s body, awaiting what feels like the inevitable infection- how is that in his best interest? Yes dialysis itself has transformed his health and he’s so brightened and alive on it, but the means to dialyse are not working.
And then, what if no infection, or it lasts long enough to get to transplant: the intense immunosuppressant therapy required. He’s now classed as severely allergic to two antibiotics and one antihistamine. He has a history of gut shutdown, a known side effect to these drugs, and if we’ve taken that vessel for dialysis we have lost access for intravenous feeding.
I have screamed in pain in RD’s bed imagining him no longer being with us, but I wrangle with what his needs are. Do we decide to fight and let go when there is no choice, or do we know we’re on a path to no choice that is filled with risk and pain and wonder whether it’s worth walking down? RD only knows what is happening to him in the moment. In spite of his cognitive disabilities I have fought for him, but now because of his cognitive disabilities I wonder who I’m fighting for: more time for us or him.
Non miracles aren’t newsworthy.
Wolf wants to try again. It’s in his gut. And I love him for it. It’s an impossible fight to have between us because there are no winners.
For now we’re going away on holiday next week. We’re having photographs taken. A charity is organising a party for Rufus with a live orchestra for our own little maestro. A chance for us all to love and celebrate him. The hospice has been engaged for more than respite.
And then we will meet again with the medical team around us, to try and find a way to navigate this. Push or pull. This unchartered territory has been invigorating but now it feels impossible.