One Last Breath is the old Creed song. It seems so appropriate right now because the inevitable has finally caught up with us. A long period of relentless monotony has given way to a new phase in my Girl’s journey. It was always coming. It was never going to be good.
Three weeks ago now, she began bloating up again. I wasn’t overly worried. It’s happened before. A little constipation here, a little gas there, lying around in bed—well, the result seems almost obvious.
As usual, I threw myself into the old routine, packing her with laxatives, giving her plenty to drink, administering all the correct medications, and carrying out all the appropriate procedures.
This time, after firing the entire arsenal at her, the situation remained unchanged.
In desperation, I searched through all my cases and boxes of medical equipment, and found a lab test form I hadn’t used. I took samples and sent them away for analysis, just in case something unexpected was brewing. The results came back a big fat zero—nothing sinister, nothing threatening.
When one of the hospice nurses paid us a visit I explained our dilemma. Her advice was to take my Girl to the hospital, let them figure out what was wrong and get it treated.
Now, let me just reiterate that long ago I came to the difficult decision not to put my Girl through a battery of unnecessary procedures and stays in hospital if it could be avoided. She hates the hospital, and only wants to be at home. She wants her music, her Smurfs and her surroundings. And yes, she wants to be with me. But her comfort has always been at the top of my list of priorities, so reluctantly, I agreed, and called an ambulance.
We arrived at Accident and Emergency with the usual fanfare—nurses recognising us, chatting about past visits and what’s brought us in today. I tell them it’s the same old story but I’m out of my depth and need the heavy firepower. They book her in and she’s immediately tended to by the doctor before being bedded down in ADU, the diagnostic unit.
Doctors come, doctors go. They make notes and tisk. I tell each of them in turn that my Girl is probably constipated, that I’d done everything I could but I suspect there could be something else going on. There are muffled consultations with specialists and registrars, murmurs of the dreaded “abdominal fluid.”
I’m desperately resisting the urge to groan aloud. I’ve been down this road so many times I own real estate in the downtown area. And so it goes:
The Emergency doctor tells me the bloating is probably fluid. It’s what happens when the liver is failing. It’s called Ascites. The cells in the liver don’t have enough protein and so they leak. The resultant fluid fills the peritoneal cavity and bloats the abdomen, causing pressure on the organs.
I suppress an audible sigh and tell him, Yes, yes, I know all about this, that this has happened more times than I can count, and that, Yes, if he wants to order a scan, he’ll find there’s a little fluid but not much, and there’s a whole wad of gas he’s ignoring but I understand he has his procedures so we may as well get on with it.
He tells me the significance of ascites. I nod and tell him it’s gas. He tells me they can drain the fluid but it comes back even more quickly. I tell him that so does the gas. He’s not listening. He tells me they need to find out how much fluid there is. I heave out a frustrated breath and tell him I’m her mother, I know what’s going on and if they’d just listen to me and address the cause of the constipation and the gas, they could get to the actual problem instead of getting sidetracked with the prospect of Ascites. Then we can address her discomfort, and get back home where we should be.
I can’t count how many times we’ve done this. It’s like we’re having two different conversations. Or maybe it’s like I’m speaking a different language, and while they’re polite and displaying an understanding of my predicament, they’re not hearing me.
But when the scan results come back, something’s changed. They show a large quantity of fluid in her abdomen.
Despite the fact that I probably already know, I ask the doctors what this means, just in case I’ve got it wrong. Just in case there’s a positive spin I hadn’t heard about. They tell me that they can drain the fluid, that it’s not uncommon, but it’s not a good sign. The fluid comes back, sometimes twice as fast. It crushes the organs, presses on the diaphragm and limits lung capacity.
What can I do? Leave it? Hardly.
I agree to have the fluid drained. But there’s no ying without yang. For every action, there’s an equal and opposite reaction. I’ve done enough physics and cared for my girl long enough to know what that means—taking that much fluid means the protein is depleted. She’ll have to have an IV line in so they can administer replacement protein.
And here we go again. We’re hurtling towards exactly the ending I’d vowed to avoid: My Girl’s life ending in a series of procedures under harsh hospital lights, with doctors and nurses and noise and discomfort.
I ask for our beloved palliative doctor. It turns out she’s moved on. Wendy, the Palliative nurse arrives. She’s Scottish and I doubt she’ll mind my mentioning her because she’s EXACTLY what I need. She’s straight-talking, honest and fabulously supportive. I ask her how long my girl has. She tells me if it was anyone else, she’d say days. But she knows what a fighter we’ve got here. We talk about options. There are two. Neither end well. She contacts the Hospice and of the twelve beds in the entire place, they’ve made one available. It’s immediately booked.
By the end of the day I’m exhausted. I’m about to go home when the young registrar appears. He tells me there’s more they can do, that he feels we’re giving up too quickly. I tell him this has been a long day after a long battle. I tell him I don’t want her put through exhaustive procedures to no avail. He says my girl has a urinary infection and a suspected lung infection. I know he means well, but the question is: What is the objective here? Keeping her alive? Or keeping her comfortable?
He tells me that the infections mean she’ll be in discomfort. If she stayed just for the weekend, they could treat her, bring her comfort. I can’t get hold of my doctor, or the hospice nurses, and Wendy’s gone home. My resistance is two feet below ground level, so I relent.
By the time I’m halfway home, I’m furious with myself. I’ve just gone against everything I promised my girl. She’s where she doesn’t want to be. She’s in pain and away from her home. The instant I get in the door, I call the hospice. The bed is still available. I tell them to keep it. Next I call the hospital, and speak to the ward nurse. I tell her I’m coming first thing in the morning and I’m taking my girl to the hospice, and that I’m not taking NO for an answer. I tell them she doesn’t want to be in a hospital, that she’ll be frightened, that she wants her mum. By the time I’m done blubbering down the phone, and begging them to take the very best care of her, the nurse has noted down my request and alerted the doctors.
Don’t worry, Baby, I’m coming to get you.
Stay tuned. There’s more to come.