Beating people can be good

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).

Beating his chest

Chest infection continues. Bit of a worry really as he still has some spots etc. that usually clear up with the antibiotics - doctor feels he's quite run down. Presumably infection main is viral and antibiotics are just breaking up any bacterial secondary infections. It's up to his immune system to clear the viral part. Physio helps clear gunk - particularly the stuff he gets on the trampoline a couple of times a week with ordinary and PEP (positive end pressure) mask in between.

The physio he's had has been a literal life saver as the recurrent chest infections would have taken over long ago had it not been for this progressive and intensive physio regime. Unfortunately none of it is provided by the NHS - the charitable service provider that does his day care employs a specialist physiotherapist full time for the people they deal with and it's pretty much down to him - we owe him a lot. When he took a well deserved holiday, all the NHS could provide was two basic sessions a week and they were unaware of PEP and unable to do the trampoline physio. The people were well meaning and good as far as they went but it worries me that the mainstream service is so poorly trained and overstretched these days.

Back to relying on charities - come back the workhouse, nothing is forgiven.