Tuesday, 28 August 2012

Memories of a tactless doctor . . .

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.  

Friday, 17 August 2012

The 'H' Word


Acorn's Children's Hospice
Established in 1988, Acorns Children's Hospice Trust is a registered charity offering a network of care for life limited and life threatened children and young people, and their families, across the heart of England. These children and young people are not expected to reach adulthood and require specialist care 24 hours a day, 7 days a week. Acorns is currently supporting over 630 children and more than 880 families, including those who are bereaved.

I left Little H on his own there today for the first time...

Four hours in total I will be away. 

He will have time in the hydro pool and the sensory room. His nurse is lovely. She has had him before and I know she will look after him. I feel quite proud of myself for leaving him.  I know it is in his best interests - he needs to get used to spending time with other people and the time in the pool and sensory room will be fun. It is good for me - I need to learn to trust that others can take care of him and give myself a bit of 'me' time. I know it is a 'good thing'. 

I have left him for a few hours recently too; with his complex carers at a sensory play group. So really this is no big deal. It really shouldn't be. There are nurses there. They deal with far more complex children than H. Much sicker ones too...

I left him easily enough. Managed to wander round some local shops and grab a coffee and a muffin. But then it hit me. And tears stung my eyes. And a hard lump formed in my throat. And my hands shook.  And my stomach squirmed and churned so much I had to concentrate on not being sick. 

Spending time away from Little H isn't the problem. Leaving him in the capable hands of a team of nurses isn't what's upsetting.  Its not the leaving him itself that is difficult.

I have just realised I have left my son at a hospice.

A Hospice.      And all that implies.

My son.

And it is breaking my heart.

Wednesday, 8 August 2012

Do they know those days are golden?

I've listened to Elbow’s ‘lippy kids’ a lot lately and it fills me with a sense of melancholy. If you've not heard it (and you should - click the link below) it’s about a man reflecting on the carefree days of youth as he watches the kids hanging around a street corner. 

“Do they know those days are golden?” he asks.

And they don't do they? We don't realise how quick the time flies, how suddenly things can change. How precious and sacred the naive innocence of youth. 

“Build a rocket boys” he urges.

Make the most of now. Grab life with both hands. For in this moment, in this moment of innocence you can achieve anything. The whole world is yours for the taking.

I am sat in town watching a group of teenagers playing table tennis on one of the many tables that have sprung up around the city, inviting passersby to stop and play for free as part of a nationwide ‘Ping’ event.  I am filled with that familiar sense of melancholy. I want to shake them and tell them to make the most of these precious care free days; to bank these memories, to remember these feelings, to appreciate how simple and uncomplicated life can be. I feel like I have been robbed of my innocence somehow, that my eyes have been opened to a cruel world that I never realised existed before. I feel real pain at that loss. I long for the days when things were simple, when my child growing up and going to school were just things I took for granted. I wish my eyes hadn't been opened and my heart scalded by the fear that one day I will lose him.

And yet conversely, these days are golden.  

I have hours and hours of video footage and photos and banked memories to remind me of these precious precious days. It remains unspoken but there in the back of my mind is the thought that one day, these memories, these photos will be all I have. No doubt then, I will want to come back in time and shake myself, remind myself how precious these days are.

Do you know these days are golden?