Monday, 20 June 2016

Father's Day in hospital- finding the positives

So, how was your Father's Day weekend?

Well ...
Ours involved our 6 year old being resuscitated 5 times, 4 of those we did ourselves. We had a 4am blue lighted ambulance trip and two nights in a high dependency unit.   Hugh had 3 lots of midazolam, 6 double doses of clobazam, lorazepam and a loading dose of phenytoin.  That's basically a whole heap of psychoactive drugs for a tiny 6 year old to take. 

So, probably not our best weekend.

But, you know, it could have been worse. 

snoozing in HDU
Hugh responded well to the recently increased dose of midazolam and whilst he unfortunately needed stronger drugs to stop them reoccurring, it did work to stop the individual seizure and get him breathing again. His last episode like this was back in March (coincidentally Mother's Day weekend).  He failed to respond to the midazolam then (hence the increase) and we were at a very real risk of losing him. So whilst I'd rather the seizures hadn't happened at all, I'm reassured to know the increased dose of midazolam does work. 

Hugh's 'big' seizures are rare and life threatening. Often the only outward sign is that he stops breathing. I think the seizure activity must affect the area of his brain that controls breathing or something. It's not that he physically can't breathe effectively, as with some types of seizure, it's that he completely stops breathing- l think his brain just doesn't tell him to breathe any more. We are as prepared for this as we can be- we have a bag and mask and oxygen which we use to breathe for him (like mouth to mouth but more effective and controlled) and we have the midazolam - the drug to stop the seizure and get him breathing by himself again. Sometimes though Hugh likes to mix things up a bit and instead of lying still and unresponsive- as you might expect from someone who's not breathing- he then starts to jerk and convulse as well. This makes trying to resuscitate him extremely difficult as it is very hard to keep his airway open and get the oxygen in. In hospital there is a team of people to help- one holds his head at an angle, one holds his shoulders still, one holds the mask in place and forces the air into his lungs. At home, alone, this isn't as simple. The events in March were particularly difficult, I wasn't able to resuscitate him by myself. I've since been taught to pin his head between my knees if this happens but I've lived in fear of this reoccurring. Last weekend however, Hugh lay floppy and lifeless during his seizure. And whilst it's not a position I enjoy seeing my son in, i am grateful that we were able to resuscitate him effectively and keep the oxygen pumping round his body. Whilst I know it won't always be this 'easy' (relatively speaking) I'm relieved to know it doesn't always have to be as hard as it was in March. 

Feeling brighter.
Hospital is often the last place we want to be, but sometimes it is the best place to be. When Hugh's seizure stopped at 4am on Friday morning, we debated whether to keep him at home. But we decided that he'd had too many seizures by this time and that he really needed to be in hospital. At 630am when his seizures started again, I was exceptionally grateful we'd made that call. He was exactly where he needed to be- with the highly trained staff of the high dependency unit; people who know him well and have stronger drugs than us at their disposal. Likewise, when he seemed to be recovering well and we were offered the opportunity to to go home, instead of grabbing it and running, we opted to stay an extra night to be on the safe side.  When the seizures returned and he needed more intravenous drugs to stop them, I was grateful we hadn't left hospital when we had the chance. Hugh was where he needed to be. 

Hugh was discharged on Sunday: Father's Day. Daddy's present was simply to have his son home from hospital. His special Father's Day dinner was a take-away pizza. 

It certainly wasn't the weekend we'd planned, nor one we'd hoped for. But Hugh is home, he is happy, he is well and for now, the seizures have stopped. That is certainly something to feel grateful for. 

Home at last.
You can catch up on what happened at the start of the weekend here

Friday, 17 June 2016

Always waiting for the next big seizure

I knew before the monitor started beeping that he was going to stop breathing. I knew it somewhere down in the pit of my stomach, right in my very soul. We had him lying on the bed, airway open, the bag and mask to hand, oxygen on, 15l per minute as the colour drained from his lips, his fingertips, his cheeks. The sats monitor began alarming then, finally recognising Hugh's plummeting oxygen levels, only seconds later perhaps, but we felt light years ahead. We brought his colour back quickly, pumping the oxygen steadily into his lungs. One... Two ... Three. His cheeks pinken again, though his body remains limp and lifeless. His chest artificially rising and falling with each pump of the bag. His eyes staring, unseeing. One minute and thirty seconds later, he breathes again. Not a bad one this time, but we know there's more coming. 

We lie him in between us in the bed. I'm reminded of when he was little and this was how every night was spent. Holding a tiny hand each, the slightest movement alerting us to any pauses in his breathing. Back in the days when we had no monitors to warn us. Back in the days when he'd stop breathing so frequently. Back in the bad old days. 

We doze, expectant... Waiting for the next one to hit. It will come. It always does. An hour later and it starts again. The sats monitor screeches that his oxygen levels are 28%, the blue tone of his face concurs. I worry that the alarms will wake his big brother. Rhythmically I force the air back into his lungs, his airway now so floppy we need to support it to keep it  open. It takes longer this time. A minute passes, two, three ... We work as a team, knowing how this works, having done it so many times before. One takes the bag, the other administers the medicine, aiming for half in each cheek. He splutters, vomits and breathes again. Four minutes in total. The electrical impulses in his brain, misfiring, preventing him from breathing for four whole minutes.

Not a bad one. 
We've had worse. 
The time he didn't breathe for 16 minutes. 
The time the medicine didn't work and the seizure wouldn't stop. 
The time the ambulance had to pull over on the way to the hospital. 
The time I had to lie him on the ground in the car park and give mouth to mouth.  
The time he convulsed so badly I couldn't hold him still enough to get any air in, and I watched, helpless as he turned a darker and darker shade of blue. 
That was the worst.

Last night wasn't so bad. 

I resuscitated him twice. For 6.5 minutes in total he didn't take a breath. 
But that wasn't the worst time.

I live in fear, that the next one will be the worst time. 
Or the last time. 

Today the front door remains unlocked, should the paramedics need to come in.
Today I have a hospital bag packed and ready by the front door.
Today my chest is tight and I am breathing too fast.
For the next one.

"It's all over now mum, what are you stressing about?"

Tuesday, 14 June 2016

Why I love my son's feeding tube

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. 

chubby cheeks!
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
Hugh’s waking and sleeping patterns run to a timetable all of their own and I can’t imagine how I would get him up and ready for school if I had to try and wake him to feed him breakfast too.  Instead, I can attach his feed while he sleeps.  Likewise, when he’s poorly, I know that I can still ensure he is adequately hydrated and getting all the medicines he needs.  The feeding pump which seemed so complicated at first is easy to use and Hugh has been happily fed in all sorts of places – in the back of a car, at parties, in pub beer gardens and while walking to the shops.  It’s actually incredibly convenient.  Children often ask about it when they see the tube and I explain that it’s the lazy way to have his dinner – he can even eat while he’s asleep. 

"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.