I’d like to start this post by saying that things are pretty good at the moment. Little H is much healthier; the ketogenic diet has reduced the severity of his seizures so that although he is having seizures every day, he is able to breathe during them. Considering the amount of times we have had to resuscitate him in the past, this is a significant improvement and makes life much easier – we are managing to do things as a family now, even managing a week’s holiday (in Wales, close to hospitals) rather than half the family being confined to the house for fear of what H would do when we were out.
Perhaps the very fact that things are easier has prompted my rather reflective mood lately. Or maybe it’s simply that enough time has passed allowing me to process events more clearly. Whatever the reason, I have found that I am recalling events from the past year and realising just how bad things were. I suppose when in the midst of it, lurching from one disaster to the next, running on adrenaline and no sleep, there just isn’t the time to process any of the emotions involved, or to think about the reality of the situation or the likely outcomes.
You just keep going.
Because you have to.
This morning I remembered a doctor at our local hospital, who we named ‘Dr. Dick’. His name was Richard and he was unbelievably tactless and insensitive at times, hence his nickname. He told me that the choice of blanket I had on H’s bed wasn’t particularly helpful (it was blue) as he couldn’t find him when he’d stopped breathing. Bearing in mind how quickly H would go blue during a seizure and how serious this was, I failed to find the funny side of that ‘joke’.
He also regularly made comparisons with his own daughter who was slightly younger than H. Bearing in mind how ill and developmentally delayed H was it seemed entirely inappropriate. “My daughter’s nearly that age and into everything, it’s such hard work” and “my daughter had chicken pox recently, it’s a nightmare isn’t it?” (H had ended up in HDU twice because of the seizures brought on by the chicken pox virus, I hardly think that compares to the few itchy scabs his daughter had).
Another time, after a particularly scary ambulance ride* to hospital, where H hadn’t responded to the Midazolam and had required rectal diazepam to try and stop his seizures, he commented how he hated to hear the sound of sirens coming towards the hospital as he knew something bad had happened. Mr. M calmly managed to respond “imagine hearing them coming towards your house then and knowing it was for your baby”.
*scary ambulance ride
You probably imagine that all ambulance rides are scary to some extent when it’s your child being whisked off to hospital, but when you’ve done it a few times you realise there’s more than one way to get to hospital in an ambulance. There’s the calm and relatively relaxed way, where the paramedics come to the house and check the child over, they have time to sit and ask lots of questions and fill in forms and you have time to grab some stuff for the hospital bag, arrange child care for your eldest and ring your other half. The journey itself goes at a reasonable speed and you end up in A&E where you wait with everyone else (I was quite surprised that there’s no queue jumping allowed for arriving by ambulance).
And at the other end of the scale is the super scary ambulance ride, when you and your child are bundled into the back of an ambulance regardless of the state of undress of either of you, the ambulance starts to move as soon as you’re in, sirens on, lights flashing. Monitors and oxygen are hooked up to your child while the paramedic in the back makes urgent phone calls through to the hospital with sats levels and heart rates. Your child is whisked away on the trolley, while you’re still undoing your belt and taken to ‘resus’ not A&E. Here you’re met by a team of about 15 Paediatric Drs and nurses. That’s when you know it’s serious!
Back to the story ...
So, Dr. Dick came to visit me one day last summer in HDU. H had been in and out of hospital for weeks, staying for days at a time, coming home only to return again days later, more often than not by ambulance. He was uncharacteristically sombre as he sat by the bed and apologised that there was nothing he could do to help. We’d become quite familiar faces at the hospital; I think many of the nurses liked H. He said that the nurses had been getting angry and upset that every week H was coming back and that they weren’t doing anything to make him better, nothing was stopping his seizures. He apologised again and said he wished there was something more they could do and they were trying their best.
It occurred to me today that H must have been very very ill. I don’t think I realised that at the time.
He asked if we’d eaten and said he’d get the nurses to order us a pizza. Maybe he wasn’t that bad after all.