Many many years ago, Florence Nightengale did something that no self-respecting, well-brought up woman would do…she went into nursing. She discovered the horrors of military medical care and set about to improve outcomes and reduce mortality and morbity. Florence was the first documented quality improvement nurse.
She found an environment with an absence of hygiene and set about cleaning things up. And we are still trying to get people to wash their hands.
Sure things have improved – we now have antibiotics – and super bugs. And transplants and graft vs host syndrome. And ABO cardiac transplants and multiple transplants over a short life. And cut down liver transplant and the facinating opportunity to care for a child with his liver sitting outside his body.
Major organs should never be located outside the body. I’m pretty sure that is one of tenets of medicine. If it isn’t, it should be.
The brutal load of months of hospitalization with no hope of abdominal closure upon the family and the staff provides little grace or evidence of mercy. One can only hope and perhaps try to convince one’s self that the child is in no pain and little awareness of the situation – until he opens his eyes; clear and solomn. Discovering the mind wrenching surgical wound beneath the dressing and the responsibility for cleaning and dressing it again will break the strongest nurse. To do it day after day is to invite moral distress and to court staff attrition with a rapidity that will make the administration breathless.
As for how the parents cope with this – well, one does what one can, and if that includes stepping over the role of parent and becoming a technician and perfroming nursing behaviours, who can blame them?
I remember another liver and another child some 15 years ago or perhaps it was another lifetime. The first ‘cut-down’ liver transplant. Very innovated, cutting edge stuff. An adult donor provided the meat, the experimental subject was a small child of some 18 months. Most certainly the child would die without this sugery. Most certainly the child would die with it. Do parents know we use their children for experiementation?
The small body returned from the OR so many years ago and despite the surgeons optomistic idealism, the adult liver lobe didn’t fit into the child sized abdomen. Duh! All those years of medical training and they couldn’t spatially predetermine that it wouldn’t fit. I can’t remember how many days she lived. I can only remember the horror of lifting the sterile drapes to find the liver sitting on her abdomen. A liver that I was supposed to keep moist and sterile. The belief was that once the swelling went down it would be enclosed within the abdomen. Looking across the belly into the other nurse’s eyes I could read the ‘what the fucked!’ inside voice screaming.
I remember the hysteria escaping once when the ultrasound tech arrived to scan the liver for portal vein patency. He held up the probe by it’s cord with the head dangling down and slowly rolled a sterile condom over top of the probe. The impotence of the probe was just the stimulus needed to start the giggles…
I never thought to see the senario again. Yet there he is, liver exposed, looking nothing at all like a liver should look, with a child’s large hopeless look of resignation at the antics of adults and the subjugation of his body to the demands of the gods of advancing medical care.
Florence? Florence, are you there?