Hi guys, it's been such a long time since I blogged but yet again we're back in the mids of another health crisis and I find myself drawn to blog it all out!
Struggles
Coo is poorly, he picked up another chest infection a few months ago and it's never really left! This has meant a crazy increase in his daily seizures - he has poorly controlled sleep seizures at the best of times and this latest infection has created a challenging spike! We were managing but the gradual decline just wouldn't let up. We've saw his Epilepsy nurse and tried upping the AED's (anti epilepsy drugs) for the seizure spike and antibiotics with varying success any infection is problematic, nothing is working.
Things are difficult if Coo needs admitted to hospital as he needs a side room and me to stay with him as his unpredictable seizure activity can't be contained in a ward. We've been there and it's awful for all concerned so we avoid admissions like the plague!
A few nights ago, things deteriorated so much, he was really struggling as was I so we had to get advice from NHS111 and ambulance services came out. They were great. They gave him a Nebuliser treatment as his oxygen levels were 89% and were very kind and patient. We explained why unless it was absolutely necessary we'd prefer to stay at home where he has seizure and wander alarms and we can cope better in the familiar surroundings and thankfully they listened. Coo's now added steroids, yet more antibiotics and now a Nebuliser to the mix. We're still battening down the hatches and battling through but I'm hopeful thing's have now peaked and tentatively optimist we could be coming out the other side.
Who carers for the Carer?
Thankfully Coo has an SDS (Self Directed Support) care package in place so I no longer feel so alone when things get really scary for us both. I know help is there and I don't feel as if I'm drowning anymore but at times like these, in the quiet wee small hours, when sleep evades me I do worry for those carers still struggling on alone as I was for so many years. Just who carers for them?
Stay strong my friends as will I
((hugs)) Maz
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