I don't think I'm a control freak, but I'm probably not the best person to judge that (or if I am, I probably am the best judge!). But letting other people take responsibility for my son, and not knowing how he is when he's ill is really hard. As I've said before, we have a really good nursing team, but he needs a lot of chest physio just now to prevent the infection re-consolidating. They're good nurses but variable at doing physio, so we find ourselves going in, even when he's not officially with us, to do extra physio and PEP. We try not to offend them but I'm afraid a bit of irritation with mum and dad is a small price to pay for an uninfected chest.
He's been taken off the heavier antibiotic and seems much more comfortable and interested in life, if still very easily tired. The worry is that, as last time, this is the point he's susceptible to re-infection through aspiration (breathing in secretions etc.) so the physio is critical. Regardless of any offence it causes, we will be going in to do extra physio - particularly over the bank holiday weekend when his main physio is supposed to be off.
PS Over the last 27 years, we've found intensive physio at least as effective as antibiotics in preventing and treating his recurrent chest infections. On the rare occasions we do go into hospital, or have to rely on 'community' physios, I'm stunned by how little people get and how infrequently. It seems a 'no brainer' to me that however good the antibiotic is, it only kills bugs. It doesn't shift the debris - that needs something physical, like coughing or physio. I dread to think how many people are compromised or die of this 'residual', nominally uninfected debris on their lungs. I know physio is often prescribed, but the amount is usually trivial and not available at weekends. I hadn't realised bacteria only worked 9 to 5 - even bugs seem to get weekends off (but not carers).
Saturday, August 28, 2010
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