HOW? WHEN? WHERE? WHY?

Sat here with a child who is obviously not well!
But then she has been obviously not well for 14 months, its just the degree of not well that varies.
Some days I know that she is not well but reasonably OK.
Some days she is really doing good and much less unwell than she is capable of being.
This last few days I am struggling to know if she is unwell enough for me to stop coping and ask for help?
pre June of last year if she was like she is now I would have considered ringing an ambulance rather than the doc for advice!
In the last15 months I have come to accept a different kind of normal...accept is perhaps a too strong word! I have stopped thinking that being considerably unwell is necessarily a reason to speak to a doctor/nurse/professional,
Dealing with everyday life has been different for us than most families for a long time! Jonathan and Rosie have altered our perspective of "normal" considerably. Normal for us has involved medical equipment traveling with us everywhere, knowing where the nearest hospital is before we make an arrangement to stay somewhere, ensuring we have adequate medication for all eventualities....and of course leaving it behind and having to persuade a strange doctor who has never heard of your child's condition that you really do need Clobozam and Diazepam for the same child and yes it is OK to give both within 4 hours of each other rather than let the child go too blue in a seizure!
However accepting that dramatic changes in normal for a heart beat and a SAT's reading has not yet seeped it's way comfortably into my subconscious. I am sat here watching my daughters resting heart rate exceed 180 beats a minute and wondering if that really is OK to be a new normal?
She had an ECG 24 hour holter monitor a few weeks ago and the letter from her pediatrician just did not m,ake sense to me! Apparantly a heart rate that fluctuates and has peaks as hers did can be seen in normal children!
Well yes maybe it is but maybe that is because a normal child would in 24 hours be running around, climbing stairs getting excited about things around them....my daughter is laid at rest in her wheelchair, maybe raising a weak smile at an occasional pretty sight or her siblings antics, but some of her peaks of hear rate were in sleep, and when nothing had even caused her to open her eyes much less get excited enough to raise her heart rate!
If a heart rate of 180 is perfectly normal the maybe I have got it wrong and my normal kids are really desperately ill as non of them have a heart rate like this!
Anyway, back to tonight. having had a few days of beaing out and about, a drive to Norwich to take grandparents to the airport...the airport has no excitement built in when you sleep al the way there and back really does it? On the way back we did stop off to look at at a holiday centre set in tranquil woodland, Heart rate exceeding 180 regularly, slowing to 160 for brief spells, Eve sleeping or resting limply. We arrived home and she slept all night till myoclonus woke her in the early hours, a cuddle sent her back to sleep jerkily and she was a little more awake in Church although fell asleep before 11 and slept all afternoon. Monday we went off to a medieval spectacular, it was extremely hot and my little wilting lilly did not cope very well at all, we stole shade and sought out breeze where we could and Eve slept limply all day with her heart rate doing obscene races above 190 at one point.
Today my little wet lettuce chewed up string of a daughter has slept all day and tonight blessed me with green rivers from her rear end, heart rate peaking at 186 and slowing at best to 148 beata a minute.
Is she ill? well she has this horrid disease known as Leigh's Disease. But is she ill rather thanjust the genereal not rightness of having this disease? Is this some horrid acute deterioration? If so do I need to ask a Dr to take a look? Will they "do" anything? Will a doctor at our local hospital even have any more idea than me....or as much idea as me??? Should I ring the specialist hopsital 2 hours drive away? should I just accept this is the new normal? Will I regret not doing anything come morning or if I do something and spend a frustrating night in hopsital with staff doing nothing will I regret that?
she isnt unduly distressed, I am not fearful for her immediate safety, I am concerned what this continued raised heart rate may be doing to her already weak system. But is there anything they can or will do about it?
How do I know, When should I ask advice, Where do I go for help Why am I so uncertain???

Meanwhile do I go to bed with babymonitor turned up loud or set myself to sleep here beside her on the sofa????