Monday, August 23, 2010

Everyone worries about their children

The chest goes on. He's really taking a long time to pick up from this infection. We're still doing whatever he enjoys - he went to a multi sensory environment he loves over the weekend and although the trampolining is really physio, he enjoys it so much we're making sure he gets as much of it as he can. He gets weary though and is too tired to do much. One session every couple of days takes it out of him and he has to sleep a lot to recover, on oxygen much of the time. He is a little better each day, and on the strength of that, the doctor has reduced him to one antibiotic. It does look like he's pulling round but times like this always remind us that it's his chest that is the real high risk factor, with his fits a slow second.

Sleeping and waking times for him are 'interesting'. He sleeps whenever he wants to, regardless of day or nightime. He has been known to sleep solidly for 48 hours and then stay awake for the same amount of time. He'll often be awake during the night and asleep all day, we've tried to get a pattern worked out but it really is random. One particular feature is that he actually has three 'phases' - awake, asleep and 'aggressive' sleeping (when he has muscle tone, but refuses to surface whatever stimulus you put in.) Unfortunately there also seems to be a fourth phase emerging where he goes into such a deep, unrousable sleep that his oxygen saturations drop alarmingly - we're hoping this is just a temporary feature of the chest infection and will clear as his airways 'block off' less with the secretions.


  1. I hope your sons chest infection clears soon. You are right - we do always worry about our children. My sons are in their thirties and despite being men - they are still my children and I still feel protective towards them. I am sure this annoys them sometimes!

    You and your wife deserve a medal! Your love and devotion to your son is admirable!

    Anna :o)

  2. Thanks for empathy - no medals due, we just happen to be in this position, most people would do the same for their children. Sometimes I worry more about my daughter than my son. He has someone watching over him, she's 200 miles away and on her own (though at 30, I'm sure she's happy with that.)