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August 2, 2020

the belief of a friend

So tomorrow is national friendship day, and I wanted to share what one special friend did for us just over a year ago.  She saved my childs life, not in that spectacular CPR kind of way (although Im sure as a nurses she prob could) but by believing me when I said something was wrong, and coming straight over to my house to help.  I thankfully will never know, but that belief and coming over might be why my child is still here!  And how many other friends have been needed on this journey we are on and the important role they play in our lives.

It started with her brother (well actually if im honest we now know it may have started two years earlier when chicken pox went on to her lungs, causing her to have difficulties breathing and needing a hospital stay for pneumonia – two weeks later her brother on antibiotics as a precaution against this contracted a rare syndrome called Stevens Johnsons, a reaction between a medication and a virus – we were incredibly lucky to have a doctor in A and E who had seen it before and acted fast to stop his medication and save his life – but thats another story!)

But this episode, started with my little boy.  Two weeks earlier he woke in the night fighting to breath and screaming like he was consumed with pain (we know now this was possibly one of his seizures brought on by the infection )a good friend came and took us to A and E were he was sent home with antibiotics,  two nights later we were taken by ambulance as he was struggling to breath and needed some support for the night.  But once home the next day he bounced back to the little boy we all love and know.

Fast forward a few weeks, and my little girl seems not quite herself in the morning, her chest is heaving and shes struggling with breath.  I assume she has the chest infection her brother had, and take her to the doctors.  They agree, shes given antibiotics and we are sent home.

Later that evening, she seems no better and once I put her to sleep, her breathing seems worse.  I call my good friend Michelle (shes a paediatric nurse and health visitor), I will be forever grateful for what she did next as it saved my childs life.  Despite it being ten pm she came straight over a fifteen min drive.  When she checked my girls oxygens levels we were at 86 (95 and above is normal 91 and below is in need of oxygen support ).  We called an ambulance.  However when they arrived she awoke and started to scream and scream and scream (i now know this is a sign she is in a lot of pain and that her oxygen is very low), but this meant she pulled more oxygen into her lungs, and her levels went up to 95.  The ambulance said we could prob go to bed and see how we got on.  Thankfully Michelle was there as she insisted that her levels had been too low and we go to hospital.  We did,  On arrival her levels dropped dramatically again, and she was put straight onto oxygen.  In the next hr I watched her temp go from too high to dangerously low, as her oxygen levels plumitted along with it, despite oxygen being administered at higher and higher levels,  Heart rate increasing, and then decreasing,  all signs I now know, mean your body is starting to shut down and fail.

I was told the next day, if we had not gone into hospital when we did she would not have made it through the night.  Thank goodness for angels in the guise of friends!  Because I seriously think, i would have overrode my own judgement, thinking they knew best and gone back to bed with my baby girl.  She almost certainly would have died in her sleep as her oxygen levels got lower and lower and she became exhausted from trying to breath!

Another friend walked over to be with her brother that night and bring him to visit the next day in hospital – I want to just note here a thanks to all those people who have done similar things for us over the last few months.  I will be forever grateful for the role they have all played in helping us get through this year!!  Friends have brought food over, sat with my little girl to monitor her oxygen so I could have a rest and helped us through in many small and large ways.

We returned home and my little girl returned to her bouncy happy, sassy self.  We even managed a little camping trip to wales J However mid july brought us a high temp.  Nothing else and yet, as mum you just sometimes know!  Nurse agreed nothing else to note, but also was one of those amazing medical staff who listened to my concern, rather than fobbing me off as a overly nervous mother.  She  noted we hadn’t had a follow up xray and perhaps we should chase that up.  One was ordered as urgent that day.  It showed she still had Pneumonia, worse now in one lung, better a bit in the other.  Antibiotics and sent home.

Next day, oxygen levels are all over the place, and im just feeling unsure. So back we go.  To this day, I can see why we were about to be discharged.  She was running around, playing with the other kids, ,laughing, talking by far the liveliest kid in that room!

But she went to sleep whilst we awaited the doctors signing off her discharge.  And then things rapidly changed.  One and a half of her lungs collapsed and the difference was less than half an hr and going to sleep – from one very alive and happy child, to one who could barely breath.

Long story short we have had many hospital admissions like that – possibly the worst being cornwall, when we had to wait over an hr for an ambulance as her oxygen levels plumitted and she lost control of her bladder in fear and pain, another hr to get to the nearest hospital and a night were the consultant working with us didn’t think she was going to make it through as her breathing did not respond to any support she was having.

We have seen hospitals in wales, and Birmingham, Manchester and cornwall to name a few! Worked with lots of different medical teams, and fought hard, to get her the right support!

Friends have been there through all this to help make it easier, Michelle in particular is always at the end of the phone if Im unsure about something, and again proved what a golden friend she is, when my son, twin to my daughter started to have seizures,  Gelastic laughing seizures.  This time, I trusted my mother instinct.  I knew something was very very wrong, and it was a seizure, despite doctors and others telling me it was more like a stroke but wasn’t that so prob just to do with him running a temp.  When everyone else told me I was just overreacing because of all we had been through.  Michelle believed me, she watched the videos and pointed me in the direction of Gelastic seziours and a support group that might help with this very rare form of epilepsy.  Which gave me the confidence to march into the GPs and tell him he was wrong, you could indeed laugh during a seizure and who to refer us too.  Six months later we are under the care of a neurologist and know that these seizures definitely do exist and are almost always due to a brain tumor on the hypothalamus.  We got that help and support and the right care, because a friend believed me.  When the rest of the world thought i was being a paranoid over reactive mum, she believed and twice its made huge difference to our lives

So this is in honour to all those friends, who stand by us in our darkest moments.  Thank you!

As well as all those parents of children with complex needs who need those kinds of friends badly, I had a taste this year or how hard and lonely a path that is to walk, and take my hats off to all those who walk this path, with far more complex issues than ours.

And for those children, including my own, who face such scary painful episodes with such courage and hope – you are my hero’s !.


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