Be alert, don’t be alarmed

Investigate moleI was changing Ollie’s nappy the other day and I noticed a red mark on his chest. When I immediately wondered if it was petechiae, I realised just how ingrained my medical alertness had become.

In medical speak, petechiae are little red dots caused when bleeding occurs under the skin. For us, they were the first sign Aidan was low on platelets and one of many things we had to be on the lookout for during Aidan’s life.

Dressing Aidan was more than just figuring out if his shirt matched his shorts, it required a mental checklist of potential issues as Anthony and I scrutinised every inch of this body:

  • Is his stomach more distended today?
  • Is that a pimple or an abscess on his leg?
  • Are his nappies wetter than normal?
  • Are his nappies too dry today?
  • When was his last bowel movement?
  • Is he more tired and sleepy than yesterday?
  • Is he breathing more rapidly?
  • Is his chest working harder?… the list was endless.

As the primary carers, we knew we needed to alert to any changes in his frail little body but it wasn’t easy. It was hard to know if he was tired because, like any of us, he was just tired, or if it was something more sinister. Was his nappy wetter than normal because he’d drunk more or were his kidneys struggling? Sometimes we didn’t always agree – I would think his stomach was swollen and Anthony thought it wasn’t. Often it was subjective.

We lived by the motto of ‘be alert but don’t be alarmed’. Rather than ringing his medical team at all hours of the night, I usually waited until his weekly visit when Anthony or I would turn up to hospital with a shopping list of ailments. We would run through them with the doctors and haemotology team, ticking off which ones were of concern and which ones weren’t.

Occasionally, if I was really worried, I would call. The conversation nearly always started with, “It’s probably nothing, but…” For the most part, it was nothing serious but on occasion I would spot something that would require a course of antibiotics or a hospital admission and I would breathe a sigh of relief that I had got on top of it early.

Yet no matter how vigilant we were, we sometimes missed things. Like the time I thought Aidan was asleep in the pram when in fact he was unconscious, or the time he was lethargic all day and we didn’t realise his kidneys had stopped working.

The weight of that responsibility is immeasurable.

Now with Ollie I need to learn that a bruise is a bruise and not an internal bleed; that a fall doesn’t have the potential to break bones; and that a fever is probably due to a virus and not a life threatening infection. It’s a completely different mindset and one I’m clearly still adjusting to.

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