I can visualise Michael nodding and sighing at this statement
When it comes to Nate I try to remain cautiously optimistic BUT I like to have a back up plan. I like to be prepared. Just in case, you know? A clear course of action makes me giddy with glee, a slight exaggeration I suppose, but it allows me to function in society. Kind of.
Sometimes pressurising professionals to join me on my wavelength and help formulate a simple plan can be like banging your head against the proverbial brick wall.
" oh we don't need to plan for that"
" oh that's not going to happen anymore" " why would he need nursing at school? " etc
It must be quite easy for them to pass off " a good spell" as "the new Nate". And while I remain optimistic about these things I have to be realistic as the back of my mind retains images of a purpley Nate being ressusitated by my husband, ambulance rides, Nate with wires in and out of his little body, Nate intubated and on a ventilator, and professionals bagging him. So when I'm told he's made good progress health wise I nod, smile and then plan for when he does these things again anyway... ( all the time secretly hoping I'm proven wrong) .
The advantage of being a pain in the backside who always thinks they are right is having the balls "cough" confidence to disagree with pretty much everyone about your children and what's best for them.
I've learned to say "no".
I was late to this party though as Michael has been disagreeing with everyone about everything from the start ( no surprises there, it's nothing new for him..) and we would sometimes fall into an odd "good cop bad cop" routine without even thinking about it. Clearly now I've picked up a useful disagreeable habit.
Note this is only a problem if you are wrong which obviously I never am...
Things I have been stubborn about ( so far) :
-Insisting he went to a school with a nurse and bags of experience with children being, quite frankly, a bit dodgy.
- I wouldn't have our oxygen removed from the house. It remains for use in an emergency. Likewise school needed oxygen and guidance ( the same plan as ours) on when to use it - sats in the 80s give oxygen and get to hospital. Not as our paed worried- " well people would be putting him on oxygen for just anything". err no I think you've missed the point there.
- unusual episodes of laughing and staring are not just "part of Nate" and after much pushing we have a focal seizure diagnosis and start treatment next week.
So yesterday after school when Nate did something he hasn't done for a year and a half we were prepared for it. He hasn't " grown out of it" at all. He spiked a temp of almost 40 dropped his sats to low 80s and HR was 170- I gave emergency oxygen and waited for an ambulance as the next stage in this not so merry dance is typically an increase in oxygen requirements and eventually a need for extreme measures ( bagging/ ventilation/or less scarey humicare ) and it became clear I couldn't get him to hospital safely. I realised too that if he had done this an hour earlier, school would also have known how to act.
This is one time I wish I had been proven wrong, but guess what? I wasn't.
Hi, Yep, I'm with you.... Trust your instincts every time! This has been re-enforced to me so many times. Liz x
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