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.
Saturday, 13 December 2014
Wednesday, 19 November 2014
|Mmmmm ... luminous green mush!|
Hugh took his first ever packed lunch to school yesterday – smoked salmon, cream cheese, broccoli, cauliflower and spinach, - a little bit fancier than his big brother Sean’s usual cucumber sandwiches and a lot more fiddly. Blended to a pureed consistency it looked radioactive with its luminous green glow but I felt so proud being able to send in ‘real’ food.
You see, for the last three years Hugh has been fed by a tube. Initially an NG (naso-gastric)tube – a tube that passed up his nose, down his oesophagus to his stomach, then via a gastrosotomy (a surgical opening into the stomach via the abdomen) through a device known as a PEG (Percutaneous endoscopic gastrostomy) and now a mini button. Prior to tube feeding, Hugh had fed orally. At 14 months I was still struggling to wean him and he was mostly bottle fed, though he managed some purees. Apart from severe reflux issues early on, which were resolved with a cocktail of drugs and changing his milk formula, he was managing to gain weight adequately so although his feeding wasn’t really age appropriate we weren’t overly concerned.
|L-R: The NG, The G-Tube, the button (photo credit for G tube)|
That all changed however, when a long and dangerous run of seizures left Hugh unable to swallow. In fact the seizures, and drugs used to stop them, had a devastating effect, robbing him of his ability to roll, to lift his head, even to smile. While he recovered on the high dependency unit, he was fed through an NG tube and as time passed and he started to improve enough that coming home looked likely, we were trained in how to feed him using the tube. I was devastated. I was under no illusions that Hugh was developing typically, but this tube, taped to the side of his face, marked him out as different. Tube feeding felt like such a step backwards in a world where our steps forward were so few anyway. I’d previously sat waiting for hospital appointments and seen posters offering support to tube-feeding families and thought ‘at least we don’t have to deal with that’. I was assured though that it was only a temporary measure while he recovered from the effects of the seizures. I remember a speech and language therapist coming to see us on the ward before we were discharged (speech and language therapists also deal with feeding and swallowing issues as well as communication) and discussing surgical options for tube feeding. I looked at her aghast, disgusted even, explaining that we didn’t need to think about that, as his tube was only a temporary measure and he’d be eating orally by the end of September. That was in July 2011! (You can read a little bit more about this time here: Six months on from an epilepsy diagnosis)
As time went on, I began to see the benefits of the tube. Instead of being admitted to hospital every time he got ill, I could keep him fed or at least hydrated at home. Previously, any bug – coughs, colds, sickness and diarrhoea – would leave Hugh too tired and weak to eat or drink. It would be impossible to get fluid or medication into him and he’d invariably end up having lots of seizures and become dehydrated. The tube made managing that a bit easier. But the down side was his poor little face, my God, it was red raw. He’d pull the tube out at all hours of the day and night ripping the surgical tape from his face as he did so. He wore socks on his hands constantly to try to stop him grabbing it and I changed the tape daily as he would try to rub it off with the back of his sock-covered hand. Re-passing the tube was a nightmare, during the day the community nurse would come and do it, but at night we’d have to take him to hospital. Often parents are trained to pass tubes themselves but we were advised that because Hugh was so difficult to pass a tube on and fought it so much that it was safer to get a nurse to do it. I would have to pin him down while he screamed, held his breath and went blue in pain and anger. Invariably they’d draw blood. We’ve since discovered that his adenoids were huge and his tonsils almost touching so it’s no wonder it was so difficult and painful. At that time though it was necessary but I felt so evil pinning him down while he screamed and cried. Poor Sean witnessed it once; he was only two at the time. He sobbed for ages and was really distrustful of any nurses that came to the house for a long time after that.
I tried my hardest to wean Hugh but seizures and illness made it impossible, so a year after having the NG tube, I was begging for a gastrostomy – at least the skin on his face could recover (by now the stigma of a tube was the least of my concerns) and we wouldn’t have to fight him so frequently to re-pass the tube. He’d also get to use his hands again – they could come out of the socks!
|Cauliflower cheese anyone? Anyone?|
Since then we’ve persevered with the weaning. There have been peaks and troughs – times when he’s managed a full days worth of food orally and times when he struggles to swallow at all. Like most areas of Hugh’s life, progress moves at a glacial pace. Being on the ketogenic diet (for hisepilepsy) makes it all slightly more complicated because he has to have a very specific ratio of fat and carbohydrate, plus everything needs to be blended to a purée consistency. But we’ve persevered, invested in a high tech blender and fancy digital scales and I make batches of meals for him and freeze them. Sometimes he’ll manage quite a bit, other times it’s just a mouthful or two before he gags or gets tired. When he comes home from school he’s usually far too tired so lately weekends and holidays have been the only times I’ve been able to really pursue this.
However, yesterday, the speech and language therapist assessed his feeding at school and has given the green light to say that Hugh is safe to have tasters of food at school now too. This is fantastic news and in Hugh terms a real leap in progress. From now on, when he’s well enough, he’ll be having small amounts of food at lunch time, just little tasters but hopefully this will progress to larger quantities. Hugh used to always be so motivated by food – when he was little, we always seen the most intentional communication around meal times (i.e. shouting to mean “hurry up mum give me some more”) so I’m really hoping that it will help in this area too. The routine of being able to do this regularly at a set time every day is bound to help him too.
So while at first glance sending a packed lunch into school for a 4 year old child doesn’t seem such a big deal, for us it’s a huge achievement and I hope that it’s the start of many more small steps in the right direction.
Wednesday, 5 November 2014
You might see me with Hugh, chat to us, see me walking to the shops and think everything is normal, fine, relaxed. Have you ever seen me hold his hand while I talk to you? This is not just to give him comfort that I'm there (he's severely visually impaired) but also so that I can spot instantly if he has a seizure even if I'm not looking directly at him. I'm constantly watching Hugh - his fingertips, the end of his nose, the way his toes wriggle or his eyes move. Fingertips, nose and earlobes are the first to turn blue if he stops breathing. Hugh might be happily facing away from me whilst I chat, but I'll be glancing at his fingers or the way his legs are moving without you even knowing.
At one point all we did was wait for the next seizure. They dominated our lives entirely. I couldn't leave Hugh alone, not for a second, just in case. I couldn't pop into the kitchen, or upstairs to the bathroom without taking him with me. I'd been caught out before- he'd turned blue in my absence, so I didn't leave his side. I couldn't toilet train Sean- it would mean leaving Hugh. And when things got really bad, we were confined to the house- the very realistic fear of resuscitating him in public, whilst trying to look after a willfull 2 year old Sean was just too much for me to manage. With the help of friends and neighbours Sean was taken to nursery a few times a week and Hugh and I lived as virtual prisoners. During that time I spent my days and nights waiting for the next big seizure. Sometimes it'd be hours later, sometimes days. If we got past 7 days I became anxious, knowing the next one was sure to hit soon. The worry was always- would he recover from this one, or would this be the one that takes him? Perversely there was almost a sense of relief when the seizure had happened- at least it was over and he was ok.
Living like that was exhausting. Being constantly on high alert, never sleeping just dosing. I slept holding Hugh's hand either through the bars of his cot or with him in the bed next to us so I'd know if he stopped breathing. We had no monitors then, no oxygen, no bag and mask. Just Stephen and I giving mouth to mouth to our baby at all hours of the day and night.
The SATs monitor gave us some relief knowing that if we were too exhausted for our seizure-sixth-sense to kick in it would alarm when his oxygen levels plummeted. Then we were provided with a bag and mask and oxygen to resuscitate him, which felt more calm and controlled than giving mouth to mouth.
As the gap between the seizures grew, thanks to the ketogenic diet, the danger seemed less imminent. As month after month passed without Hugh turning blue or needing mouth-to-mouth the adrenaline eased and whilst I wasn't quite poised at the starting line, ready to dash at the gunshot I was still hovering, waiting, watching.
Hugh continues to have seizures about 3-4 times a week, mostly at night. They tend to just involve some teeth grinding and odd movements. He continues to breathe throughout, they don't upset him so we just let them pass naturally. We had a huge period of 9 months where he hadn't stopped breathing but lately they've been creeping back in. Illness is always a worry, it's a well known trigger for seizures and this has certainly proved to be true for Hugh. It doesn't have to be a significant illness either, simple coughs and colds can send Hugh's brain activity into overdrive and before we know it he's being blue-lighted to the nearest hospital. He's been very ill and not had bad seizures though and he's been fine and had horrendous ones. He's a little conundrum. The unpredictability of it is unsettling. It could literally happen at any time, with no warning.
So we watch and we wait.
The events of the last few months have thrown me a bit. I'd kind of hoped he'd grown out of the scary type of seizure, but if anything they have returned with a vengeance. Instead of being controlled with rescue medication in the house, he's needed hospital admissions and IV drugs to bring him round. The past still haunts me and I dread the day we ever return to living like that. I hope and pray it won't come to that though. We're back at the stage where our reactions to the SATs monitor alarm are lightening bolt, whereas previously I'd amble in fairly confident it was set off by a wriggly toe. I'm constantly checking him in the mirror while driving and keeping him close at all times. It's been just over a week since he last stopped breathing so it'll be a while before I'll be ready to relax a bit. In the meantime Hugh continues to be his happy cheeky smiley little self, oblivious to the extra worry he causes.