Feck the Itinerary

Motorcycle adventures and other stuff …

August 24th – Two steps forward, one step back

August 25th, 2009

I suppose the very fact that we are struggling to find activities to keep Mum amused in her incarceration, is a sign that there has been some progress. Some. Days after I wrote the last blog entry, she was diagnosed as having something called Critical Illness Neuropathy, a neurological infection affecting patients with critical illnesses, in case you hadn’t guessed. It knocked her back a bit, to say the least. The infection prevents signals from the brain reaching the muscles, thus affecting the function of the heart, lungs and, well, practically everything else. She became incredibly weak, even losing the power to hold a pencil.

A lesser person might just have turned up their toes, but it seems Mum is made of sterner stuff. A week later, with no sign of being able to wean her off the ventilator, the surgeons operated to put in a trachyotomy. That evening, for the first time, they propped her up in bed and she sat reading the paper with the doctor. Seeing her the following morning, I was hugely relieved to see her looking more recognisably like my mother, albeit with a gaping mouth and lop-sided face.

Over the next week or so, the muscle tone came back and she was able to smile again. The improvement continued day by day until, greeting her old friend Margaret, she put her arms up and was almost able to manage a hug. Almost.

Then, calling the hospital on Saturday , I was told that Mum’s infection markers were up, she had had a bad night, and had been taken down for a CT scan. Not the news I was hoping for, particularly as her friend Fergie had come all the way from Norfolk to see her. John and I went to meet him at the hospital and he kindly bought us lunch, while we waited for the sedative to wear off.

That afternoon, while Fergie sat with my mother, the surgeon gave me the bad news. The CT scan had shown up a fistula in Mum’s gut. Normally they would operate to close it, but owing to Mum’s age, the high levels of infection and the awkwardness of the site, they felt it would not be in her best interest. Instead they would change her antibiotics and hope that the leak would seal itself, as they sometimes do. I was visibly shaken as I rejoined John in the hospital reception. He tried to put his arm round me to comfort me, but it had the opposite effect and I burst into tears. So I put on my bravest smile and we sat like two bookends at either end of the sofa waiting for Fergie to finish his visit.

Poor Fergie. He was longing to know what the surgeon had said, but I couldn’t repeat it all without crying, so I left out the most depressing details. Fergie had been staying with my mother when she collapsed at the beginning of June, so he has become almost family over the period of her illness. It felt like a lie, but he seemed so encouraged that she had opened her eyes and smiled for him, that I didn’t want to dampen his view that “she is going to make it”. We saw him into a taxi, and then I had to ring my sister, my aunt and uncle: Mum’s sister and brother.

Although I was told that Mum was in “no immediate danger”, the infection is a nightmare. While MRSA grabs the headlines, and provides a perfect excuse to hurl abuse at our beleaguered health system, it is eminently treatable. There are far nastier things out there. Acinetobacter, for instance, has been identified among casualties of the Iraq conflict, but is becoming increasingly common in mainstream hospitals on both sides of the Atlantic. It is resistant to all but the widest-spectrum antibiotics and can live for weeks on skin and dry surfaces and, yes, Mum probably did acquire it at Newport’s, unusually excellent, NHS hospital.

So, what now?

Well, actually, in the days that followed Fergie’s visit, Mum rallied again. By Monday, the antibiotics seemed to have the bacteria on the run, and her signs were returning to normal. Within a few days, she was bright and alert and smiling again. I have started to take a “talking book” in with me, which we can sit and listen to together. I chose Dirk Bogarde’s autobiography, “A Postillion Struck by Lightening”, the title of which, I know, will mean nothing to our American friends, who refer to a “pillion” (short for “postillion”) rider, simply as a “passenger”. Anyway, Mum hates it: not my choice of book, particularly, just having to sit in a chair and stay awake for half an hour. But the doctors say it’s good for her, so I tell her she just has to put up with it and, as she cannot talk, she cannot argue.

Today, after much negotiation on the part of Mum’s nurses, I got the IT department to lend me a small projector so that I could run a little slide show of holiday photos. When I told her that I was going to show her my photos, I could have sworn I saw a twinkle of excitement. I duly set up the laptop and projector, and Mum looked at the first two or three photos as I sat close to her right ear and told her what they were. Then, as often happens with slide shows of other people’s holiday photos, the audience dozed off. I let the show continue in silence, then packed up the projector and left Mum fast asleep with her mouth open. Only the ventilator prevented her from snoring …

Intensive Care

August 9th, 2009

Our lives are, for the time being, dominated by daily, sometimes twice-daily, trips to the hospital, where Mum continues in Intensive Care. Her recovery from a life-saving operation on July 18th is slow: sometimes to the point of being imperceptible. Each day seems to bring a new challenge: high temperature, low blood pressure, high sodium, sleepless nights, restless days … Since she still requires support from a ventilator, she cannot speak, which tends to keep our visits short. On a good day we will get a beaming grin and, if she is feeling strong enough, a hand wave. But not being able to communicate soon becomes frustrating and, as the banks of monitors behind her head warn us that her heart rate and blood pressure are rising, we reluctantly leave. On a bad day, she might open her eyes for us … but then again, she might not.

Every input and output is measured and recorded by a devoted team of 3 or 4 nurses, who have, over the last three weeks, become like family to us. Other patients come and go from this dimly-lit subterranean world within a day or two, but, for the most part, Mum has the entire staff of the ICU to herself: one nurse permanently stationed at the end of her bed, diligently plotting her progress on a giant chart. And, while Mum concentrates all her efforts on breathing, around her others busy themselves adjusting drips, checking lines, taking bloods, resetting alarms …

No five-minute visit seems to pass without some activity on the part of the medical team and, yesterday, I witnessed Mum’s physiotherapy workout. As she has spent so long lying down, there is now a concerted effort to get her used to being upright again.  This is an undignified process, by which Mum is strapped to a tilt table and gradually inclined to an angle of 45°. Then two physiotherapists, aided by a couple of nurses, help her raise and lower her arms, touch her forehead and squeeze their hands. It is painful to watch the disproportionate level effort and exertion required, but the team seem delighted by her progress. Occupational Therapy brought her a large television so that she could watch Coronation Street, and asked about her hobbies …

Friends and relatives call every day to ask if and when they might visit. Some seem shocked when I tell them Mum is still in Intensive Care and unable to speak. I don’t give it too much thought. There are few other places in the country where she would receive such dedicated care. To some extent, I have become desensitized to discussions around care plans and interventions: topics that would have previously left me faint or weepy. I find myself being almost alarmingly matter-of-fact about Mum’s condition. But the doctors are upbeat about every small improvement, so why shouldn’t I be?