Killing me softly…….

Before I start this post in earnest, I want to make it clear that this is not a pity party, nor a woe is me, attempt to curry favour or sympathy; rather it’s a jumble of thoughts that have gone through my head in the last week and I suppose a sort of “vent” which is why I blog anyway.

The Christmas hols had seen our family relax the rules that we normally follow fairly strictly – after all, getting 4 kids homeworked, fed, bathed, stories read and into bed at appropriate times does seem to require military style planning and a timetable that makes landing planes on multiple runways at Heathrow, in fog, with all other UK airports closed – the proverbial piece of cake. So enjoying our down time, we had been enjoying a rather more laissez faire approach to the proceedings and were not at all on the ball.

If you have children and they are anything like mine, their attempts to string out the bed time routine range from the sublime to the ridiculous. There’s the “I’ve just remembered I’ve not done my homework which I’ve had for 3 weeks and must be handed in tomorrow” type episodes to the “I just need to check in the wardrobe, under bed, toilet, drawers, washing machine, laundry basket” etc or the simple yet effective “I need the toilet” – not one you really want to take chances with, however much you think they might be swinging the lead. Someone tell me I can’t be the only mother who has hissed through (very) gritted teeth “You’d better DO something then and watched as said child dangles precariously over the white porcelain, purple in the face, eyes watering in an effort to produce the SOMETHING?

Anyway, this week my daughter went back to school, like most children round the country. The bed time routine the night before went better than anticipated after a few weeks break. Despite it being like riding a bike, it normally takes us a night or 3 to get back in the swing of things before it all runs like a (mostly) well  squeaky oiled machine. Nonetheless, despite the ease of getting everyone into the correct rooms, properly attired for bed and stories read, I was not optimistic about the getting up process for the following morning.

We like our sleep in this family. We like it a lot. Hubby and I worked very hard with the kids as littlies to ensure they went into their own cots/beds and stayed in them until we were ready to face the day. As a result of sheer effort and determination, they all enjoy their sleep. They know that they can read in their beds when they wake or play quietly but Mum and Dad are not to be disturbed on pain of DEATH or at least a limb hanging off. •

I’m often amazed how my little Minx can sleep through her feeding pump beeping at night. It decides to beep annoyingly for all sorts of reasons, some of which, particularly at 2am, are impossible to decipher. Normally the same method I use with the computer works fairly well  – control, ALT, delete…ie – if in doubt, switch it off, take off the giving set, feed it back through and start again….that often allows me enough time to hop back into bed, snuggle under the covers and then it will alarm again. All I can say is it’s a good job, Minx is generally a sound sleeper otherwise she may have learnt some very inventive invective from me!!

Anyway, fortunately sleep through alarms, monitors and episodes of reflux that are clearly painful (as evidenced by the coughy/choke/screech performance) she does but she is not easy to wake up in the morning. I think that’s probably an understatement to be honest. Limbs flail, covers are ripped back from your hands, she grunts and mumbles and generally gives you the evil eye, that’s if she bothers to open them.

In her defence, there is a bit of a family history of being difficult to rouse in the mornings. It has to be said that in my own family, they used to draw straws to see who had the unfortunate task of waking me up on a school day. I even ended up with a teddy-bear nicknamed “Shi**y” because the unfortunate soul whose task it was to get me up (usually Dad, sorry Dad – is this what you mean by you get the children you deserve?!) used to poke me with the aforementioned bear whilst I released a tirade of abuse, culminating in the phrase “it’s shi**y!!!”

So on the first morning back to school, I was largely expecting her to be unamused (understatement) having to be woken at 7:20am. We creep into her bedroom at 7am to start the waking process. Blinds up, fairy lights on, feed pump disconnected and medications given via her gastrostomy port. She’s then left to huddle under the covers until the point of no return.

As some of you will know, Amelia had a new gastrostomy sited in October 2014 which caused some complications and required further surgery in November. Although that surgery was successful, it’s not all been plain sailing. The surgeons put in a gastrostomy button that was 3 sizes to big for her tiny tummy. Unfortunately, by the time they realised that it was the wrong one, they were very afraid that taking it out and trying to replace it with a smaller one would jeopardise her stoma altogether. For an idiots guide, think of the stoma as a kind of straw that attaches to the stomach, the gastrostomy device sits in that and can be accessed externally so that feed goes directly into her tummy. That would have meant much more complicated and invasive surgery to open her tummy by about 6 inches and caused other risks, especially in light of the surgeries she has already had in the past, hence the Doctors reluctance to do anything else.

Without going into grim details, since the gastrostomy was far too big, it allowed stomach acid, gunk and feed to leak from the site onto her tummy itself which causes irritation and burning to the surrounding skin. It’s been a real juggling act to prevent that in itself breaking down the stoma tract as it’s very fragile and she has been in a lot of discomfort and pain. Our community nurse summed it up brilliantly when she described the gastrostomy in situ as being “like a worm in a welly boot!”

The tubing kept flopping and hanging partially out of her tummy creating more irritation and pain and so it became a vicious circle of twice daily cleaning, packing the leak, protecting the skin, padding the site and preventing the gastrostomy from moving. That’s a lot for anyone to take, never mind a just turned 6-year-old. It has added about 40 minutes a day to our usual routines and I have to say has been quite an effort both physically and mentally. Neither of us has come through this unscathed.

Although it was changed last week for a better fitting size, under sedation, which didn’t work, the site itself is still a bit of a mess and needs twice daily attention.

Amelia knows more of pain than the majority of children her age. She has experienced many frightening, painful and traumatic hospital procedures and experiences that would leave an adult in a sorry state. Generally she is very able to compartmentalise what happens in hospitals and what happens outside but of late the lines have blurred and I have become a nurse figure as well as her mother.

When you have a medically complex child, there are boundaries that you are forced to cross. I swore some years back that I would no longer be the one holding my child down for the medical bods to extract blood, pass a naso-gastric feeding tube or carry out electromyography (needles passed into muscles repeatedly and stimulated with electric current…no anasthetic) because it was simply too damn traumatic for us both. As her mother she needs to be able to trust me implicitly, to know that I will always be her voice or advocate for her when necessary, to calm her, soothe her and actually have her back. To be the one to say ENOUGH, she’s been through ENOUGH, you will not do this anymore.

And yet, there are times when I have had to break my own golden rules because medically we have reached a point where if there isn’t an intervention, however much she is terrified of it, however much she begs and pleads against, the consequences of NOT doing something are far greater than the consequences of doing it. When your child is so de-hydrated and their already difficult to access veins are collapsing in front of your eyes, when you know that they are going into hypoglycemic levels and could become dangerously ill, you know you have to be the one to help the nurses, to get the child prepared, to hold their hand and horrific as it sounds, to hold them down. Ultimately, it’s for the greater good but it doesn’t stop you feeling like crap; it doesn’t desensitize you from their suffering and it doesn’t stop me going off for a good cry in the loo once it’s all over.

How you maintain the balance of being a trusted parent as well as a carer is a very difficult road to walk. I cannot expect nurses to come into our house every day, twice a day for that matter to do what needs to be done. Not only do we not want them here (no offence meant) but it’s a waste of valuable NHS resources and ultimately, if I can get Amelia to relax and let me do it, then this is better for all concerned.

However, every time her little body tenses up, every time she pulls my hand away and asks me if it’s going to hurt, it kills me a little bit more inside. Every time she begs me to stop or sits there blowing like a woman in labour (I tried to teach her breathing techniques to cope, it’s both heartbreaking and moving to see). Each time we have to negotiate how long I have to do what needs to be done and what kit I’m allowed to use, it chokes me that little bit more.

That she has become accustomed to asking how much pain something will cause and accepting that fairly readily is not easy to acknowledge. Some months back, my eyes were opened that she was already coping with significant pain from her gastro issues. Because she doesn’t comment on it much, because she has become so used to it and powers through it, we all continued the sympathetic cuddle, head nod when she mentioned pain. It had just become her expected norm. That probably sounds shocking to you the reader doesn’t it? Nonetheless, I know we are not the only ones in this situation. There are far too many of my fellow parents of medically/physically complicated kids who understand this all to well, who “accept” it as part and parcel of their children’s lives because we don’t have any answers, we don’t know what else to try or which Doctor to speak with. We are often not even entirely sure what the source of their pain springs from – and neither are the medical lot, no matter how many fancy letters they have after their last name. And pain medications don’t always work or can’t be given until a specific time by which point the dose has worn off or the child has just become tolerant to them over time. Nor do you want to see your child drugged up to the eyebrows, worrying about the longer term impact of those medications because everything comes with a price.

So when I picked my daughter up from her first day back at school and we talked about her day, it was once again bitter-sweet when she told me, so stoically and acceptingly that she hadn’t done PE because she was just in too much pain and was doubled over in the corner, watching her friends but it was all ok because she was feeling better now. The physical pain is not mine but the emotional pain sears me inside like a knife through hot butter. How can I be the one to moan though when she just battles on through?

#killingmesoftly#

•(FYI, obviously they are allowed up if they are ill/need the toilet etc, just in case you think we are real meanies!!)