A "wow" post

II was torn about whether to post this or not yet.

 Afraid to "jinx" things.

Afraid to find out its not true.

However I know so many people take an interest in Nate's life that, well, it would be rude not to share the news.

We had a respiratory appointment this week. The consultant was pretty stunned at how well Nate is doing, describing him as "unrecognisable" from the floppy sickly child he was. Lovely i thought.

It gets better.

I explained how Nate doesnt sleep and probably averages 3 good nights sleep a fortnight, and that every night involves a battle to keep his mask on. Nate takes great pleasure in ( and this is a profoundly disabled child) using his mouth to remove his socks on top of hand splints, wiggles his hand splints off, and then removes his facial mask. Over and over again. The consultant thought this was one hell of an indication that my boy no longer wants to be ventilated! He also said that if he's only getting 3 good nights sleep then he isn't being well ventilated anyway. A good point I hadn't thought of! Lovely I thought.

It gets better.

He went on to say how even if Nate isn't ready to come off ventilation ( we are having a sleep study in a few weeks without ventilation to see) we need to plan for the long term as there's no reason to think Nate will only be with us a for a short time ( respiration wise). Now of course we have these emerging seizure episodes, and yes he is still undiagnosed so we " just don't know" but

Wow.

Of course the reality is more complicated- IF the sleep study shows his carbon dioxide and oxygen levels are ok we then need to weigh up the pros and cons of coming off ventilation. The full expansion of his lungs caused by the ventilator pressure means secretions don't settle. If we remove this pressure and his lungs don't expand fully themselves he runs the risk of chest infections and even pneumonia. In addition the dr says Nate will still have apnoeas but those will hopefully be manageable with oxygen. 

Eeek