When Hugh was a baby, maybe around a year old, I remember sitting in a hospital waiting room passing the time by looking at the posters on the wall. Life was difficult. Hugh’s seizures were more severe, increasingly frequent and were showing no signs of being controlled by epilepsy drugs. His development was now obviously delayed and any chance of him ever catching up was slipping further and further from our grasps, despite my best efforts. I remember looking at a poster for a tube feeding support group and thinking 'at least he hasn't got one of those'. In the depths of my despair, when life was really bad, I remember believing how much worse it would be if he needed a feeding tube.
Hugh had had an NG tube once or twice when ill (a nasogastric tube, which passes up the nose down to the stomach). Otherwise though he ate relatively normally- he drank bottles of milk and he ate basic baby style purées. It wasn't an entirely age appropriate diet but it was enough to sustain him and, despite the amount he vomited, he slowly put on weight.
Hugh became fully dependent on an NG tube just a few months after I spotted that poster. I blamed myself for tempting fate that day. His seizures led him into a prolonged bout of status epilepticus and when he finally emerged from his drug induced sleep he was forever changed; unable to smile, unable to swallow, unable to lift his head, at times barely unable to open his eyes.
The NG was only ever supposed to be a temporary measure. I mentally allowed him 6 weeks to recover and relearn the skills needed to eat. Oh how naive I was! For a long time, it was simply unsafe to give him anything orally. Hugh struggled to hold his head up independently and couldn't coordinate his swallowing. There was a very real risk that he'd aspirate - the food or liquid would go into his lungs, causing chest infections and pneumonia. Months passed before I could try him with tiny tasters of food and although he loved it, he simply found it too exhausting. Progress was slow at best. The majority of the time I felt we were going nowhere and Hugh ever being tube free began to look impossible. I was devastated and felt I'd failed as a mother. I couldn't even feed my own son.
I hated the NG tube, but I think Hugh hated it more: he'd rip it out at any given opportunity and we ended up keeping socks on his hands at all times so he couldn't grab it. Re-passing the tube was a nightmare for all concerned. It regularly drew blood from his tonsils and adenoids (we've since discovered they were huge) and Hugh would hold his breath and go blue in fear and anger. It generally took two people to hold him down while a third passed the tube. Sometimes this was as often as five times a week. It was sheer torture for Hugh and heart-breaking to watch. The skin on his cheeks was red raw from the surgical tape holding the tube in place.
It was a necessary evil though- one that was keeping him alive. He could no longer eat or drink safely, so no matter how much he/we hated it, he needed it.
As time passed though, I realised how useful it was. Sickness and diarrhoea bugs could be successfully managed at home now. Previously they'd always required hospital admissions because any illness made Hugh so sleepy that he wouldn't eat or drink at all. He'd get dehydrated quickly and end up being admitted. Now I could give him diorylite very, very slowly through the tube and keep him at home. It also made giving medicines easier. Hugh had an awful lot to take for both his epilepsy and his reflux which I’d give at regular intervals throughout the day so that he didn’t have to take too many at once. The tube made giving medicines easy - he always got the full dose at the right time; no more waiting for him to wake up or worrying about how much he'd spat out.
When Hugh was originally given his 'temporary' feeding tube an experienced speech and language therapist spoke to me about gastrostomy tubes (a tube that goes straight into the stomach from the abdomen instead of passing through the nose). I laughed at her, explaining that Hugh's tube was only temporary and he'd be eating before long. She nodded and humoured me, no doubt realising how unlikely that was.
In June 2012 Hugh had his gastrostomy tube fitted under general anaesthetic and I can honestly say we’ve never looked back. Thankfully we’ve had no major issues with it at all; it healed beautifully and has been infection free since. The risks associated with the gastrostomy are minimal in comparison to the naso-gastric tube – there’s much less chance of the feeds going into his lungs by mistake and there’s less chance that Hugh can pull it out – especially now he has swapped to a button.
|(L-R NG tube, G Tube, Button)|
|Raring for another day at school|
|"more ice-cream .. "|
The pressure I put on myself to wean Hugh off his NG tube was immense. Meal times became a battle, one I always lost, because he just couldn’t manage to eat enough calories. Now though, Hugh can eat for enjoyment. Every day he eats a small amount of yoghurt or blended fruit and he has a few spoonfuls of whatever the other children at school are having for dinner – all blended down to a smooth puree consistency. He’s a big fan of pizza (just like his mum then!) and he loves chicken curry too. Sweet treats are firm favourites as well for example ice-cream and chocolate. The thing with having a feeding tube is that I know that he’s getting all the vitamins and calories he needs from his milk supplement, so he can eat whatever he likes, just for the sheer enjoyment of it.
The thought of a feeding tube used to fill me with fear and dread, now it is just simply a part of my son, one that has helped keep him happy, alive and well.