I know I often say that the last month has been a rollercoaster, it’s an overused phrase but it doesn’t just demonstrate the severe highs and low we experience but also the speed of change and the physical and mental rush of life with Toby.
Christmas was ace, he was the best he’d been for two years, we had ten days seizure free, it was lovely, he was a joy to be around and we felt ourselves starting to truly relax.
Moving into January and the seizures started again, he went back to school and ‘normality’ seemed to resume.
When the school number rings my phone during the day I always answer with a sense of dread, his teacher knows this so always quickly states “hi Tim, it’s Natalie, don’t panic.” so I know it’s not serious. In this case it was to tell me that due to so many staff being struck down with the Noro virus they had taken the difficult decision to close Toby’s class the following day, oh, and Toby has had a 2mins seizure but has slept it off. That’s ok, I can cope with that.
Picking him up a few hours later I was surprised that he wasn’t in class and was told he had had another seizure but was now in the bathroom, he seemed to be a long time and was finally wheeled back to class unconscious in his buggy, he’d had another one.
Two a day is bad, three is really not good.
I wheel Tobes out to the car, still unconscious and begin to get him out of his buggy, another 30 second seizure, he’s floppy and clearly not good. He has no muscle tone and can’t hold his head up.
I’m not in a good place by now, worried doesn’t come close.
Now strapped into his car seat I make it 50metres before he goes into seizure again, pulling over I get in the back, administer oxygen and try to keep his airway open. It’s a bad one, I get rescue meds ready to give orally but he shows signs of coming around, it takes a few minutes but he’s not right, foaming at the mouth, eyes rolling, ragged breathing and so floppy I’m struggling to keep his airway open. I’m a bit panicky now, this really isn’t good, my mind is running through options, top of which is: ‘Should I call an ambulance or try and get him home?’
I call Kim and she immediately leaves work, I drive the short distance to her office, constantly checking the rear-view mirror to see if Toby is getting enough oxygen, I need Kim so she can hold Toby’s head up and keep him breathing as we drive home.
The situation is bad, the fact we’re driving away from a hospital isn’t lost on us but we keep going.
He goes in and out of seizure all the way home but we finally get there where our respite nurse is waiting, we’ve called ahead so she has prepared everything we need in Toby’s room.
He’s on his hospital style bed with oxygen on, a suction machine ready to suck up the foaming secretions from his mouth and we give him the first stage of rescue meds along with paracetamol and ibuprofen.
He’s in a bad way, temperature is up, non-responsive, moaning in pain and occasionally jerking with convulsions.
Our adrenaline is flowing, his hospital bag is packed, dinner can be grabbed and microwaved on the ward. We’re ready.
We jointly agree to give him 10mins to come out of the current seizure or we give the second stage rescue meds.
This is a big decision, rectal paraldehyde is not easy or fun to administer and once given we need an ambulance as we have no other options. Whilst we want to keep him at home we know the longer we don’t call for help potentially the worse it could be, we’re literally making life and death decisions.
We want to stay out of hospital if possible as we know he’ll be better at home, they don’t have a suitable bed or environment for him, and he’s likely to pick up more bugs that will then put him at greater risk. MK hospital is also on red alert due high volume of very sick patients, we really need to stay away for their sake as well as ours.
Finally, after several hours of Toby either seizing or being unconscious his temperature comes down and Toby actually seems to sleep.
At 9 we go in to give more paracetamol, Toby stirs and wakes, he’s clearly feeling better despite looking terrible, he gives us both a big hug, lets us change his nappy and sleeping bag then settles back in his bed.
It’s been a long time since Toby has been this bad, it’s a painful reminder of what we used to go through nearly every week for over a year. Things aren’t better but they have changed.
We finally settle too, on high alert, with monitors on full volume, knowing we wouldn’t sleep properly as we listen and watch every move he makes.
Our clothes are ready to be stepped into, shoes by the door, hospital bag ready to go.
We drop off quickly, the adrenaline come down means we crash out but we don’t sleep deeply, waking every so often to check the monitors to make sure we can hear his breathing.
I wake Toby up around 0730 the next morning, he’s looking pale and exhausted but better than yesterday, we’ll take that.
The even lower lows
It takes Toby days to get over those seizures. He’s exhausted, listless and obviously has a cold of some sorts but we send him to school on the Thursday as he’s clearly bored at home.
He has a good day but another fully convulsive seizure when we get home, whilst he’s unconscious and recovering I read a post from a fellow Dravet Parent, it’s the worst possible news, her three-year-old boy, Lucas was taken by Dravet, he died earlier that day whilst in hospital.
I break down, I can’t stop crying, it’s partly the news, partly the emotion of the last few days and partly the realisation that we’re lucky to still have a smiley Toby to be with, too many other families don’t.
I put a post on Facebook, it probably came out as a cry for help but I meant what I said, we should all tell our friends and families that we love them as much as we can, give that hug, smile and laugh as no one knows what’s round the corner so don’t pass up the chance to do something nice.
Sadly this is the second child with Dravet to die in as many months, it’s terrifying that we are living with a ticking timebomb with no idea how long the fuse is, during dark times like these we just feel empty, numb and helpless. Kim and I are both ‘do-ers’ we need to be moving forward and making things happen to feel in control, seeing our little boy convulsing and thrashing around and in so much obvious pain for so long leaves us unable to control the situation, something that leaves us in a mess.
Kind and generous people will often say that we’re “amazing” – we don’t feel amazing, we just get on with life as it is and on the occasions that it all falls apart, we quickly try to bounce back and put smiles on our faces. Kim had to dust herself off and go to work the day after Toby’s horrible Monday, very few people will have noticed anything different but we’re physically and mentally exhausted, drained and empty but life has to go on.
Only a week after all the seizures Tobes seemed to be back to normal, one day he was ‘helping’ Kim unload the dishwasher and kept trying to put a spoon in his mouth, normally, he won’t tolerate anything near his mouth and will push things away, not even drinking never mind eating.
We leapt on this opportunity and dipped a fresh spoon in yoghurt, he put it in his mouth and tasted it and swallowed a little!!
We repeated this several times until he told us he’d had enough.
I cannot begin to tell you how excited we were, it’s the first time in a couple of years that Toby has shown any interested in food, it’s massive for us! It was like winning the lottery.
Over the next few days he kept eating yoghurt, crisps and biscuits, it’s like weaning again and he’s clearly happy eating but it must feel funny, will it last? Is it a result of the drug reduction we’re doing? Who knows but while it lasts it’s fab and we’ll enjoy it.
I’m writing this from Center Parcs in Woburn where we’ve come away for a much needed break, Toby has been having a fully convulsive seizure nearly ever day for over two weeks now and it’s tiring for all of us.
We’re having a great time, it’s lovely being together as a family, even braving the pool with Toby which was joyous, he managed an hour and a half on the first day without incident but forty minutes into our time on the next day he had a seizure in the pool. We dealt with it calmly, having prepared his buggy with the oxygen ready. I don’t think anyone even noticed.
The staff here are being brilliant, they’ve let us take his special needs buggy and medical equipment into the pool so we’ve everything we need and everyone is so friendly and helpful, makes our life a lot easier. Center Parcs are very inclusive for people with special needs, they’re a great example of what can be achieved. It’s nice not to feel too ‘different’.
Whilst at Center Parcs we’ve bumped into one of our (many!) favourite nurses from Helen House who we haven’t seen for ages as she’s been off on maternity. It’s been lovely to have a catch up and meet her lovely family but also sad as we’ve learned from her that Helen House are being forced to close their sister hospice, Douglas House which caters for ‘kids’ 18-35 due to funding. This is a vital service for families with grown up children with severe disabilities and will be devastating for them as well as the 60 members of staff who will lose their job. Helen House are an integral part of our support network, without them our ability to cope and get joy from life would be hugely impacted. We’re so sorry that due to lack of funds they have had to make this decision.
It’s so incredibly sad that all hospices are having to review their services in the current climate and we’ll do what ever we can to help. I’m doing a radio interview in a few weeks describing our journey with Helen House to help raise awareness.
For those of you that work for or know people who work for Mercedes, please can you ask them to vote for Helen House as their chosen Charity partner this year.
And finally, if you want to donate to Helen House, please do so here. They are still a lifeline to us and so many other families. If you can spare a couple of quid there really isn’t a more deserving place.
Thanks as ever for being there for us, it means so much to hear your lovely words, get your supportive messages and see you in person (thanks for coming to see us Aunty Vic, Toby loves his new Barbour jacket!!). Thank you.