Mother: As far as advice to parents in a similar position to our own is, “Just keep demanding information”. You won't necessarily get it volunteered. It just so much depends on who you've got looking after you and your son. Some of them are lovely. The nurse who took him the night that he was put in ITU actually came to me at one point and put her arms round me and said, “How are you?” Which of course was enough to make me burst into floods of tears. But I was in a terrible state, and she was the only one that was interested. And she saw the connection between the patient and the family, and knew she had to look after all of us.
A lot of them were just focussed on the patient, and a lot of them just didn't want to be there. And so if you're worried, talk about it. If you want to know, “What's the significance of this number? Why is it fluctuating? What do I do if…?” And his tracheotomy fell apart, his tube fell apart. At one point he was getting oxygen through, and it fell to pieces. And there was nobody there. I had to put it back together. I felt I could do that. I didn't panic. I could put it back together. But I mean the fact was he was breathing for himself. And it's hard to remember that he wasn't actually going to suffocate if I hadn't got this back, you know. It was helping him, but it wasn't crucial. But, “How crucial is it?” You need to know.
They won't tell you because they do it all day every day. And to them it's just putting a breathing tube on. It's like when he wanted, when he got phlegm in his tubes, they had to put a, a tube down to clear it. And this is terrifying. It's absolutely sort of, “My God, what are they doing to him?” But you get used to it after a while and think, “Right, okay, it's just making him cough. It's just making him clear that”. But they don't necessarily explain it to you. They just do it. And you see your child sort of going into some sort of spasm and think, “My God, what's going on?” So I mean don't suppress it. Demand to know, “What is going on?” And let them tell, make them tell you. And if that won't do, go higher. And if that won't do, go higher. There's always a duty manager on call 24 hours a day. If you're not getting answers, demand to see that duty manager and say, “Look, I've got to know what's going on”.
And don't worry about making a fool of yourself. Don't worry about putting your hands on your hips and yelling like a fishwife. It doesn't matter as long as you get the information you need.
If someone says, “Oh, this is hopeless” don't believe them. Until your child is dead in your arms, don't believe them. You've got to stay positive. And you've got to keep on fighting. Your patient will fight. The will to live is very strong, especially if they're young. |
