Friday, 27 April 2012

Respite - is it wrong to take a break?

I was due four hours respite yesterday but they cancelled and have come today instead.  It has actually worked out remarkably well, because Cheeky is at nursery so it really is four hours ‘me’ time. 

This is what I had planned to do in that time: wash up, change the beds, put two boxes full of folded washing away, ironing, tidy up the pit that is our conservatory  Cheeky’s playroom, sort out all the paperwork dominating every available space in the kitchen, find the table under more of said paperwork, chase up Little H’s statement, find the floor under the pile of clothes in the bedrooms and hoover it, make lasagne for dinner.

This is what I did: watched last night’s Coronation Street, had a really long bath full of bubbles, read a few chapters of a book I started two months ago, had two cups of coffee, wrote this.


I feel a bit guilty about taking respite when H is well.  Because when he is healthy, he is actually quite easy.  He’s quite a content, happy, chilled out little man.  But when he is poorly, my God he is hard work.  But then, when he IS poorly, I wouldn’t trust anyone to look after him properly anyway.  So what’s the point of me having respite, if I get it when I don’t really need it and wouldn’t take it when I do?  Does that make sense?

After the upset of last week forcing me to acknowledge some horrible truths that I had buried in the recesses of my mind, I genuinely considered not taking H back to the hospice for respite.  We’re not really using it effectively as respite anyway, more as a family day out with an extra pair of hands.  I know, I know, it’s ridiculous not to consider going back because of what happened, but the blinkers were taken off for me and I’ve been confronted by H’s mortality.  I’d hidden away from it relatively effectively on a day to day basis – surfacing occasionally so that’d I‘d write a few words about it (here and here) and then block it from my mind.  I’m not sure how well I’ll be able to hide from it now if I go back there.  I say if, I know I’ll be back.  The boys love swimming there so I will just have to get over it.  I know I’ll get over it.  But, well ... you know ...

Being confronted by the awful reality hit me hard and I still feel tender from it.  You know that feeling you carry with you after someone has died?  An air of sadness that seems to hang around your shoulders and weigh heavy on your heart?  I feel like that.  A bit battered.  A bit war weary.  That day, after the conversation, I wouldn’t let H go.  The idea was that I was supposed to be taking a bit more of a back seat, do a bit of reading and let someone else take over for a while.  But after that, I wouldn’t let them near him.  He’s mine, he’s my son, my baby, it’s my job to look after him.  And I started to question myself – when the unthinkable happens, am I going to be happy that I read that chapter of the book or will I rue the hours I spent away from him?  I can’t get that time back.  I decided I needed to spend every second with him and make the most of them.

I digress slightly, though I’m not entirely sure what my point was to begin with.  Perhaps I am questioning whether I want respite, whether I need respite.  I feel so guilty about asking someone else to have him for a few hours so that I can get some peace/get some jobs done/spend some time with Cheeky.  And yet everyone, no really – EVERYONE – says we needs it, we should have it, we should want it.  But I can’t quite shake this feeling that I am wasting precious hours. 

I’ve tried to put it into context.  If H was a different child, an easier child, then I’d actually not think twice about asking his Granny to babysit, dropping him to a mate’s house so I could get the shopping done in peace, I’d relish those hours and that time.  It wouldn’t make me a worse parent and it wouldn’t mean I’d love him any less.  Cheeky has sleepovers at his Granny’s; he spends afternoons with his Grandad; has days out with his uncles and he spends three mornings a week at nursery.  I know this is a good thing for him (and me).  I don’t question that it means I can’t cope.  Why then all these additional feelings of guilt associated with someone else looking after H for a few hours? Perhaps it’s because it’s strangers doing it and not friends or family.  Perhaps the fact that someone else is being paid to do my job makes it harder to accept.  But H isn’t like Cheeky, he isn’t like other children and so this is the way it has to be.

Our community nurse pointed out something yesterday when I was going round in circles over this.  She said that a few hours ‘me time’ would help to recharge the battery so that I could cope in the harder times.  (Well she actually said time for me and Mr. M.  She is mightily concerned that we need a night out together but we had four hours out together 11 months ago, what more do we need?  Anyway, that’s a thought for another day).  And there’s no denying it, when Little H is well he is a delight, but when things are rough they are REALLY rough.  And I am exhausted.  There are no two ways about it.  I also look like absolute shit because I am so exhausted.  So today, I have put aside my guilt, taken a deep breath and enjoyed the few hours of peace.  And H had a whale of a time playing with his carer.  The jobs that needed doing still need to be done – some of them will get done (dinner) some of them won’t (ironing) ever!

I’d be lying if I said I feel like a new woman – I am still exhausted and I still look like shit but I’m cleaner than I was few hours ago so that’s a start.

This post is written as part of the #definenormal blogging challenge courtesy of the lovely RenataBplus3 from Just bring the chocolate

Why not join in?  Define your 'normal' and get a fancy badge, like the one on the right, to add to your blog.

Don't forget to check out the other #definenormal posts too.

Wednesday, 18 April 2012

The sound of a breaking heart

Do you know what sound your heart makes when it is being ripped out? 

Mine wails. 

It’s a guttural sound; primal almost. 

Initially disembodied; until eventually you realise that sound is coming from you. 

From me.

I found that out today. 

I took Little H for respite today.  A daycare session, a chance for us both to chill out, relax and have a splash in the hydrotherapy pool.  I wanted time to read, H I think was looking forward to being fussed and cuddled and stroked by the nurses.

And that happened.  And it was lovely.

But something else happened too.  Something that caught me unaware.  Something that punched me full on in the stomach, winding  me, leaving me gasping for breath.  Something that reminded me that I’m using a “Hospice”. 

Many people reading will already know how worried I am about the future, but for the most part I bury those thoughts, or rather bury my head in the proverbial sand.  When things are well, I can relatively easily go about my day to day life without thinking about, or more specifically worrying about, ‘the future’.  I look at Little H and I see a smiley beautiful happy little boy and I know the doctors, consultants, specialists ... they are all WRONG! 

Mostly, that works for me.  That’s how I get through day to day.  I’m not a martyr.  I’m not amazing.  I’m not strong.  I’m a mum.  That’s it.  And a lot of the time I am in denial.

And sometimes, every so often, I am caught unawares, and reality likes to give me a cold, hard, slap around the face. 

Like the time our Paediatrician took us to a separate room to ‘talk’ while H was in HDU and explained how serious his type of epilepsy was.

Like the time I had to resuscitate H on the side of a dual carriageway.

Like the time I read a form in his files (serves me bloody right) that said, clearly printed in black and white: LIFE LIMITED AND LIFE THREATENED.

Like today.

When I sat eating dinner next to a lady planning her son’s funeral.

This post is written as part of the #definenormal blogging challenge courtesy of the lovely RenataBplus3 from Just bring the chocolate

Why not join in?  Define your 'normal' and get a fancy badge, like the one on the right, to add to your blog.

Don't forget to check out the other #definenormal posts too.

Saturday, 7 April 2012

Best Laid Plans and all that . . .

It’s Easter Weekend and everyone has their plans made – where they’ll have Sunday dinner, what they’ll do with the kids over the Bank Holiday.  Well, not everyone.  Not quite.

We don’t plan.  We can’t plan.  Well that’s a lie, because I have planned to spend the next two days at my Mums with Mr. M and the two boys, but right up until the minute we leave the house, I can’t say for certain whether or not that will actually happen.  Everything in our lives is liable to change at very short notice and even the best laid plans get cancelled with minutes to spare.

Crashed out after Midazolam.
Little H doesn’t do things by halves you see.  And he likes to add the element of surprise into the equation too.  Last October,for example this cute little spooky spider was all dressed and ready for a Halloween party.  20 minutes before we left the house he had the first of a series of seizures.  30 seconds of not breathing.  One minute and a half of not breathing.  Two minutes of not breathing.  Each one got progressively worse.  Each time he reached a deeper shade of blue.  Rescue medication given, hooked up to oxygen and a Sats monitor and he spent the next hour sedated while the effects wore off.  Mr. M and Cheeky went to the party on their own.  Little H crashed out and I nursed a cup of tea in front of the telly.  Glad the seizures had stopped, disappointed that once more our plans were ruined.

I say we don’t make plans – we do – we plan meticulously in fact.  Two plans for every occasion – the ‘if everything is OK’ plan and the ‘Little H is performing/likely to perform’ plan.  (Performing – that’s how we refer to his seizures, as in playing up/misbehaving not as in acting)

And if he is up to his old tricks – or likely to be (demonstrated sometimes, not always, by being a cranky little bugger or getting a temperature) – then the family is divided and one stays at home with Little H and the other heads out with Cheeky.

The last few weeks have been remarkably ‘normal’ in our house; a healthy Little H has enabled us to make, and stick to, plans.  The four of us have had dinner with friends, Cheeky and I managed to visit relatives in Ireland (we’re not at a stage yet that we’d risk taking H more than 20 minutes away from a hospital) and for the first time in a very very long time all four of us went to a Christening together.  Wow! That’s some exciting life we lead!

Little H has been a little bit cranky this morning.  Cheeky has a cough.  These are not good signs.  If Cheeky has a cough, then it’s likely H will be getting it.  If H gets a cough he likes to milk it for all its worth and starts requiring nebulisers every two hours, chest physio, suction and oxygen while he’s asleep.  And he likes to throw in a few seizures just to keep us on our toes.  So, whilst I will begin to pack the horrendous amount of stuff needed to take Little H to Granny’s for two days (I’ll save that list of items for another #definenormal post) there is every possibility that in two hours time I’ll be making my apologies, Mum will be sticking the lamb back in the freezer and H will be hooked up to oxygen/on his way to hospital.  Who knows?  Best laid plans?  Pah! Who needs them?  Live spontaneously.  Live in the moment.  That’s how we roll! 


This post is written as part of the #definenormal blogging challenge courtesy of the lovely RenataBplus3 from Just bring the chocolate

Why not join in?  Define your 'normal' and get a fancy badge, like the one on the right, to add to your blog.

Don't forget to check out the other #definenormal posts too.

Wednesday, 4 April 2012

Ketogenic Diet: Week 6 - Shake it shake it baby!

Week Six: Thursday 29th March – Wednesday 4th April (days 36 – 42)

Side Effects of the Ketogenic Diet

What are the most common side effects of the Classical Ketogenic Diet?
Answered by: Dr. Elizabeth Neal RD
Constipation is by far the most common side effect of the Ketogenic diet. Many foods which are naturally high in fibre are restricted on the Ketogenic diet, high fat diets can also slow down bowel function. This effect can be worsened if the child is fluid restricted.  This is usually resolved by ensuring adequate fluid intake, introducing a fibre supplement which is suitable on the ketogenic diet or by using a form of suitable Laxative, the Ketogenic team can advise on the best treatments for each child.
When initiating Ketogenic diet there is a risk of Hypoglycaemia (low blood sugars) and Acidosis (increased acid levels in blood), this is more of a risk if the child is fasted prior to introducing Ketogenic meals. At initiation your child would be monitored closely and treated if necessary.

#Ketogenicdiet tweets for the week:

Sunday 1st April: Day 39 #ketogenicdiet H's ketones have been consistently high! :D wondering if the diet is why he has been so alert &happy lately #epilepsy
Monday 2nd April: #ketogenicdiet day 40 ketones dropped again this morning. :( don't know if its just a blip or whether will need to adjust maxijul again.
Wednesday 4th April: #ketogenicdiet day42 dietician thinks erratic ketones (0.8 this morn!) due to pain med for teething. Drop maxijul when using them #epilepsy


Little H’s ketones have been really eratic this week wit the highest being 4.2 and the lowest (this morning) at 0.8.  The dietician thinks that this may be due to the pain relief we have giving intermittently for his teething which really has been causing H to become quite cranky and irritable.  He’s been having Medinol – as advised by the dietician as it’s lower in carbs than Calpol – and ibuprofen at times too.  We are still using 4 scoops (1g each) of maxijul in each feed so the dietician wants me to reduce the amount of maxijul we use when giving medicine.  I’ve been making up H’s feeds for the full day (1litre in total) so will have to rethink how I organise this.  For tomorrow I have mixed the ketocal and the water for the full five feeds and am planning to decant 200ml for each feed and add the maxijul as I go along instead.  Will see how this works – especially as I am planning to pop out and meet a friend tomorrow.  I am sceptical that the ‘super soluble’ maxijul will mix well if the liquid is cold, straight from the fridge.  I may need to sieve it.  Hmmm – might be worth adding the maxijul before we leave the house then!

Remember the difficulty we have had in getting the ketocal and how we had to get a whole pile of it from the hospital instead?  Well, the stock we got from the hospital is about to go out of date! Ooops.  Luckily, we have enough in-date stock to last us until next week’s delivery from Nutricia Homeward.  I am wondering if the fact that it’s so close to its use by date  explains why the ketocal is particularly lumpy and yoghurt like?  It’s a bit like that anyway but usually a bit of a shake will sort it.  Not these ones though!  Cheeky is loving joining in with the shaking though.  I just have to make sure the lid is on carefully, ha ha.


Sunday, 1 April 2012

Ketogenic Diet: Week 5 - Can Daddy cope alone?

Week Five: Thursday 22nd – Wednesday 28th March (days 29 - 35)

#Ketogenicdiet tweets for the week:

Thursday 22nd March #ketogenicdiet week 5 starts here. Yesterday we had 2 readings above 3. Shh! Just about to check them now again to see if that was a fluke.
#ketogenicdiet #epilepsy oh well. Day 29 and still not ketotic. Will have to reduce maxijul again.


Daddy had to cope alone this week, well for a few days anyway, as I took Cheeky away on holiday.  Just a short update then – Mr. M wasn’t tweeting or blogging on my behalf while we were away!

No major problems – Daddy managed to make up all the feeds quite successfully, requiring only one phone call to check the number of scoops of maxijul he needed (even though I had written it down).  He managed to deal with the dieticians and take H to his appointments too.  Well done Mr.M!  I never doubted you could do it, ha ha.

H’s ketones peaked too and we seem to have found the right balance of maxijul (4scoops in his feeds if you’re interested).  Will see if they continue to remain high.


That’s all for this week.  Have a good week.