Sunday, 15 February 2015

The Aftermath

The aftermath of Hugh's seizures often leaves me reeling for weeks. The fear that it will happen again all consuming. The initial adrenaline rush of fighting to keep him alive subsides and I'm left feeling scared and anxious. Having left the comparative safety of the hospital; the careful monitoring of the high dependency unit and the expertise of the nursing staff, once again I am solely responsible for keeping him safe; for keeping him alive! 

I find it hard to leave the house, overwhelmed with fear that he'll stop breathing when we are out. I check and double check his oxygen and his medications. I move his car seat to the front of the car so I can watch him while I drive. I watch him while he sleeps. 



Sometimes I have to remind myself to breathe. Yesterday I nearly burst into tears in Tesco, I was so consumed with fear. I know I'll start to relax again soon, I know I won't be checking his breathing every few minutes. But for now, I am scared. Scared of it happening again, as it has so many many times before.

This time he wasn't unwell. There was no underlying illness, no recognisable  'trigger' which set his seizures off. I left him at acorns on Monday evening happy and healthy. He left two days later in an ambulance. There was no warning, no signs it was coming. Nothing!  That's the hardest thing. Not being able to predict it. Anyone who's ever visited Hugh in hospital has always been surprised at how 'well' he looks. Quite literally, he can be completely fine one minute and then fighting for his life seconds later. At 1.30am on Thursday morning Hugh was rolling around his hospital bed laughing. He was pulling his socks off and grabbing at the wires that were monitoring his heart rate and oxygen levels. The nurses cooed over him and exclaimed at how cute he was. At 2.15am those same nurses were forcing air into his lungs while he failed to breathe; they watched his oxygen levels plummet to 16%, his fingernails turn black. 

You see, the big "he's home" announcement, made via text and Facebook is only half the story. Yes, he's well enough to come home. Yes, for now, the seizures have stopped. But he's not 'better'. He will never be better. It's just a matter of time before it happens again. A matter of time before he's fighting for his life. Again. 

Wednesday, 11 February 2015

The Unpredictability of Seizures

The uncertainty and unpredictability of Hugh's condition is probably the hardest thing to cope with. I can never truly relax. And when I do, he likes to remind me just why I need to worry. He really keeps me on my toes. 

When his seizures were daily or weekly, I knew where I stood. There was always another one coming; we just didn't know if it would be hours or days away. We lived in a heightened state of awareness; always ready, always prepared. The hospital bag was always packed. We simply waited for the next seizure and responded when it happened. It was hard work, really hard work. But it was predictable. 

Now we go months between seizures, and I'm grateful for that, I really am. I'm grateful for all the 'normal' days we've had; the days we can go out as a family; the days where we've laughed and played and had fun. These were the things we missed when Hugh was really bad so I know how lucky we are to have them. But the thing is, I get used to it, I *feel* normal. I make plans. I take my eye off the ball.

And then out of the blue, it starts again. Months of stability and he needs resuscitating twice in the night. 

It never gets easier. I never get used to it. It breaks my heart and terrifies me beyond belief. This time he was in acorns, our children's hospice. We'd taken his big brother Sean out for a meal as a treat. Just as we were going to bed they rang to say Hugh had stopped breathing. 

It's been three months since he last needed resuscitating. Three months where he's been stable. Three months where I start to hope that maybe, just maybe, it won't happen again. 

We've been encouraged to write an advanced care plan for Hugh. This, depressingly, is a plan which outlines what we'd like for his end-of-life care, what level of resuscitation he should have and what happens, when ... You know ... After.  I've resisted. I don't want to think about it. But when he's well it feels a little safer to discuss it. 

After three months without needing resuscitation it feels like a hypothetical scenario. Last week I booked a meeting to discuss his advanced care plan. The meeting is tomorrow.

Today it doesn't feel like such a hypothetical discussion. Today, again, it all feels terrifyingly relevant. 

Saturday, 13 December 2014

I wouldn't change you ... But ...

I love you with all my heart son, but if I could take away your epilepsy, I would.

I sometimes wonder who you would have been without it. Would you be sitting now? Would you be walking and talking? Maybe. Maybe not. Either way the seizures are still a hinderance in your development. I don't think I realised the damage they were doing until you lost your ability to smile. When you couldn't open your eyes and you couldn't lift your head, I thought epilepsy had taken all you'd got.

You smile all the time now, my precious child; but when you look at me with such fear in your eyes, it breaks my heart. I don't know what's happening in your brain, but I know you're terrified.  It's scaring you. I wish I could make it stop. 

I'm not sure what's worse; the seizures that scare you or the ones that scare me. Seeing you go blue like that will never get any easier. Seconds stretch to  minutes, minutes feel like hours. I force the air into your lungs, breathing for you while your brain resets, praying you'll breathe again. 

Epilepsy doesn't make you who you are my child; you are amazing and wonderful and beautiful and brave. 

Your epilepsy defines me at times though- I am scared and frightened and angry and sad. 

I love you my son.
But if I could, I would take away your epilepsy in a heartbeat.