Update on Cameron
Remember - "A child with a brain injury carries all their broken bits inside."
Therefore they may appear perfectly healthy and bright in their appearance, but remember a duck glides smoothly over the surface of the water, while all the while underneath the surface paddling away exhaustingly to keep themselves afloat.
Life is like this every day for a PANDAS child.
I'm totally spent tonight, the sleep is falling out of me but I wanted to try and give you a clearer picture of what's going on at the minute.
Cameron has been much the same over the last few months, living on egg shells and having the same daily difficulties with life. However he has been enjoying being back in school for a few hours a week. Huge heartfelt thanks to Janet Broad for supporting Cameron & the family through this process! We couldn't do it with you xx
At the minute he is physically in a lot of pain with his limbs, he has a lot of dizziness in his head and is having a lot of nausea. Food and restricted eating continues to a huge major daily distress for him.
What happened today with the surgery?
The original plan back at the start of October was, that after we had gone for a private ENT consultation (we would have had to wait 46 weeks for this appointment on the NHS), we would then also have the surgery privately as soon as possible in approx 6 weeks. However then the consultant told us that he could get us an NHS slot around the same time, well taking the NHS slot was a no brainier as it would save the fund £2000!
In the car today, half way there we received a phone call to say that the present nationwide paediatric bed crisis, due to the outbreak of bronchiolitis, meant Craigavon were having to take patients from the Royal children's in Belfast and all surgeries had been cancelled.....
The surgery could be rescheduled, possibly before Christmas if not the new year, however, we are coming into a bad time of year for health and this bed crisis could continue. Cameron could most definitely NOT cope with another cancellation (HE HAS REITERATED TIME AND AGAIN TODAY THAT HE REALLY DOESN'T WANT TO LIVE ANYMORE, no one can ever know what it feels like to hear your child say that unless your ears have heard it for themselves.....) so this leaves us with a dilemma - going back to plan A to go privately or taking another NHS slot and risking another postponement. At this point, after several phone calls today the surgery is most likely to happen between 16th and 18th December.
This surgery has the potential to help Cameron immensely, it will not cure him, that's not possible (this condition is chronic). However there is also a 50/50 chance the surgery could put him into a spiralling flare as bad as when he was first diagnosed, due to the strep getting into his bloodstream during surgery. There is also a high risk that he will not cope with the post op pain or healing.
USA have given us a treatment protocol to try and combat all this to the best of our ability, including our magic supply of expensive antibiotics!
It's crucial that whatever is removed during surgery is properly cultured, as the results from pathology should indicate what strains of strep, amongst other things, are present in his body and then USA will then be able to match up a corresponding long term antibiotic for him.
Things are certainly moving in the right direction, we are in a very different place compared to this time last year. However, without a shadow of a doubt I have found it terribly hard to keep myself afloat these last 3 months, it just seems to be one thing after the other being thrown at us. We are very concerned about Annie, she's had a lot to cope with and things have been tough for her. I've lost count of the times I have sat cradling her on the sofa as she sobs her heart out about everything. Our house is still not fixed, we will not be back into it until next year. Our temp house was only approved up until this week so we are on the move again! I'm starting to pack everything up and get ready to move house again next week! Hopefully we'll be settled in our next temp accommodation before the new surgery date and Christmas.
I worry that my energy reserves are running on empty, the demands of this illness are relentless, sometimes it barely gives you a chance to breath and when you add life into the mix, well, it pushes you to breaking point. In fact it pushes beyond breaking point, as I myself have been broken several times over the last 2 years, but you know what, PANDAS won't win.
I'm going to sign off now, but as ever we have to say thank you to you all for your continued love and support. It REALLY does make a difference to us.
Massive massive fall out from this morning's events. His brain simply cannot process or cope. He's in freefall..................
God give me the strength to keep going, please.
Folks we got bad news half way to the hospital this morning. The surgery was cancelled. We are gathering ourselves at the minute, I'll come back to you later and update you further. X
Surgery D-Day has arrived!
So I can now tell you that Cameron's surgery is tomorrow.
We told Cameron a few hours ago, it went as expected, but we were prepared for that. I've given him his sedation so its's fingers crossed time it's effective tonight.
We have to be at Craigavon Hospital for 10am tomorrow morning. It's thanks to the fundraising and generosity of you all that we have been able to get this done so quickly, we would have had to wait 46 weeks on the NHS for just the ENT consultation, never mind the surgery! I will keep the blog updated throughout tomorrow. X
It's been a very tough 24 hours, our PANDA is in a bad flare. Aw man this illness is so intense and exhausting! - the tears, the sobs, the pain and confusion in his eyes at trying to deal with everyday life sometimes......he spent hours distressed & crying last night and is no better this morning.
Even nearly 2 years into it that's something that still gets me, because I can't take that pain away....
I've found it hard to keep my head above water lately. When he's in a flare like this EVERYTHING is so hard for him. His surgery date is confirmed and it's very imminent, however we haven't been able to tell him yet so we are keeping it off the blog in case he finds out as that would be disastrous, he's very very anxious & frightened about it all. Stay tuned for a full blog update next week.
My boys heading out to support 'Our Wee Country' at the match tonight. This time last year a trip out like this was completely impossible for Cameron. I have a smile on my face waving them off tonight. We have a long way to go, and he will need a couple of days to recover from his trip out tonight, but he's going, that's the thing! Small steps, but in the right direction. 💙 #myboys
Many Happy returns to the driving force behind the blog my darling wife Natasha who hits the big 4-0 today! As well as being an amazing wife and Mum to Cameron and Annie, Natasha has devoted her life to tirelessly seeking the answers to get our beloved son back to full health while doing her best to support other families on the same horrendous journey we are on to get their PANDAS children well again. I am sure you will join me in wishing her a wonderful day xoxo
You know what PANDAS, you can just go and FECK right off tonight. I'm so fecking fed up with you. I'm fed up with you crippling my son and making me feel so helpless. He has completely fallen apart in the last hour, to the point where he just lay on the ground curled up in a ball sobbing how much he hates his life and that he just wants to die........
I'm so angry I just want to scream & scream