SELF, FAMILY, TRIBE.
I’ve spent almost 40 years keeping people safe in war zones. However, I never ever though that my toughest decisions on saving a life would be at home:
I have two awesome adult sons soldiering on through life with cystic fibrosis (CF), they’re both now into their twenties.
When one of them was tiny, and before we knew that either he or his older brother had the disease, he ended up in intensive care with pneumonia. Underweight, undernourished, only a few months old, and whacked in the winter time with little to fight with.
Like any NHS hospital, doctors and staff were working on fumes as most had run out of petrol hours and hours ago. I’d see the doctor occasionally and the staff nurse a wee bit more. My son was in an oxygen tent in a side room now only semi conscious with his blood/oxygen stats flat lining. The doctor came by to see me, only to tell me that I need to call in my wife. I told him that we had other children to be concerned with too, and that she’s at home looking after them. He told me that there is now nothing more that the hospital can do, and that he believes that my son won’t get through the night. I told him that I’ll remain by his side, and my wife will be in the next morning to take my place as we’ll swap over family duties. He put his hand on my shoulder and left the room. I understood that the staff had done everything that they could have.
I looked down at my son…he was lying on his back, eyes closed but with a wry grin from one side of his mouth. His chest was showing shallow but fast breathing…and the stats were still flat lining.
Well…if there’s nothing more they can do…I’ll have to do something?
I switched off everything except the device monitoring his oxygen levels, it was fixed to a plastic peg on his big toe. I took him out of the tent and laid him over my knees while I sat on the chair next to his bed. My mind was flying…I was reminded of a wee story a teacher told us all once, about a bird falling out of a nest onto the ground. A child picked it up and cupped it in her hands…the warmth alone bringing the bird back to life. As my mind was wandering all over the place I could hear the hospital radio playing U2 songs. On came “WITH OR WITHOUT YOU” followed by “I STILL HAVEN’T FOUND WHAT I’M LOOKING FOR.”
How apt…there is no with or without you…it just won’t happen. What am I looking for? What am I doing taking him out of the oxygen tent? Is this the right thing to do?
Now the words of the songs are really haunting me…or are they simply inspiring me?
As I started massaging my son like a chicken on a spit, turning him over, massaging his chest, his back…turning, turning, turning. Cuddling him, kissing his cheek…in came the staff nurse…”what are you doing?”
“The doctor said that there’s nothing more you can do for him. Therefore I’m doing something” I said. Just then, the stats on the one monitor still in operation started to rise…my son’s breathing appeared to strengthen slightly.
She ran out of the room and minutes later she returned with the doctor.
He stood next to me silent for a few seconds, then said “What ever you’re doing…just keep doing it.” I was crying, sobbing, my face was covered with salt from sweat and tears…physical and mental energy sapping at my body…I was completely drained now.
I had switched the hospital radio off ages ago, yet I still couldn’t get the U2 songs out of my mind…the words were now perfect for the occasion.
I watched the daylight pierce through the hospital curtains…I’d now been on “stand to” all through the night and into the early morning.
My son was sitting up now, with his head against my chest. He was taking tiny sips of water that I would give him from a bottle top, as I didn’t want him throwing up…and even gathering a little laugh as I’m talking to him.
From that morning…thing’s picked up. He got better…not because of my actions, but I’m sure because he alone wanted to survive as he’s mentally as strong as an ox…something inside of him decided that it wasn’t time to give up, not right now.
He’s always been the same since.
He and his brother are like the Kray twins walking around town, but with big hearts and plenty of love…never judge a book by it’s cover, ha ha.
He’s undoubtedly the toughest individual I’ve ever come across to date…even though I know that there are many out there.
I learnt so much from that episode…I’m his father, therefore the buck stops with me ultimately. I’ll decide what happens to him, and I’ll always ask the medical staff to keep me completely informed of what their intentions are.
For years it was a hard slog, especially after learning of their inherited disease, but at the end of the day…as mentioned, the buck stops at the parents…not the medical staff, in my view. Yes, I will always heed the advise of the experts. But when it comes to the decision making, I want to be level pegging with the experts in those decisions being made, and I alone will make the ultimate choice…and bear the brunt if I’m wrong.
After years of hospitals, I don’t know where we’d be without the NHS? We’ve had problems with individuals simply because they do things on a budget, and their total plan is based around that budget. For CF patients, many times the progress is for all patients combined, and not each individual one. But I wouldn’t accept that. I’d fight and fight for my son, and get what’s best for him alone. Even changing hospitals, and at one stage, taking him out of Birmingham Children’s Hospital (arguably the best in Europe), and ending up in Cardiff Children’s Hospital simply due to individuals mistakes, and the consultant constantly talking at me as opposed to along with me.
Thankfully with the move and a change of personalities, it all turned out for the better.
Life is all about dealing with individuals, no matter who they may be, and no matter their position in the management levels of the organization that we’re dealing with at that time…it either works…or not.
But when it doesn’t, find one that leads to positiveness, in order to move forward with success, no matter how long it may take, and how far you may have to go.
I have no doubt that every individual that I had a disagreement with, was doing their level best to make things work within their, or their team’s ability…but for me, and in particular for my wee son…it just wasn’t good enough in my view.
Even today…20 odd years later, I still find myself crying when I hear these songs…but I’m crying with mixed emotions knowing that my son turned out to be an awesome young man along with his brothers and sisters. And that today’s modern medication, along with mostly a terrific team of NHS professionals, has given him and his brother a remarkable chance of life…if only we all had a crystal ball to look into during the tough choices that each of us have to make in our lives!