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.

Heaven!

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.

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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.

Ketogenic Diet: Week 7 - the one where we meet the Epilepsy Specialist Nurse (at last)

Week Seven: Thursday April 5^th – Wednesday 11^th April (days 43 – 49)

#Ketogenicdiet tweets for the week:

Thursday 5^th: #ketogenicdiet Wk7 starts here. Used control solution for 1st time to check monitor measuring ketones correctly. It is. Only 1.9 this morn.

Friday 6^th:Old film on True Movies tomorrow (Saturday) 1pm: First do no harm, could be worth a watch-about #ketogenicdiet #epilepsy. Have sky+ it.

Sunday 8^th: Eek. #Ketogenicdiet day46 ketones WAY too high-7.1! Given maxijul water &will retest in 30min. No obvious symptoms though. #epilepsy

#ketogenicdiet ketones still high at 5.9. Not sure what I’m supposed to do. Will wait &retest in a bit. Any thoughts? #epilepsy

#ketogenicdiet phew! panic over. Down to 4.2! Not happened before so was a bit worried. Didn't seem to bother H though. Thankfully #epilepsy

Tuesday 10^th: First visit to the #ketogenicdiet clinic [hospital] today. Looking forward to it. Might meet other parents which will be nice #epilepsy

Dietician happy with H's progress on #ketogenicdiet. Upping his feeds (he's been getting a bit hungry lately) & reducing maxijul again

Apparently some children do see positive effects on the #ketigenicdieteven with lower than optimal ketones #epilepsy

xxxxx

Little H’s ketone levels continue to be erratic even though we are now adjusting the amount of maxijul we add to each feed if we are giving  pain meds for his ongoing teething.  Apparently there’s about 2g of carbohydrate in a dose of Medinol or Ibuprofen so we reduce the amount of maxijul we add to the feeds by that amount.  It means that instead of making up the full feeds for the day, I have been mixing the ketocal and the water for the day, decanting 200ml just before a feed and then adding the right amount of maxijul depending on whether he has had pain relief or not.  Slightly more fiddly but still pretty straightforward. 

I wonder though if this accounted for the crazy ketones on Sunday and that perhaps I forgot to add the maxijul at all?  I’m not sure.  It was Easter Sunday and I’d had dinner and a few wines at Mum’s so it’s possible I forgot.  Did panic a bit although H showed no signs at all that the high ketones were affecting him (side effects can include lethargy, irritability, facial flushing, vomiting and panting) and was happy and smiley.  The treatment is to give maxijul mixed with water (or fruit juice or lucozade) which I did and retested after 30 minutes.  They were coming down but still not below 5.  I decided to wait since he wasn’t in any discomfort and after an hour the ketones had returned to a normal range.

This leap in ketones made me wonder if Little H’s 3am crying fits (a nightly occurrence now for two weeks) were due to high ketones so I tested them at 3am.  They were fine.  As were his blood sugars. He’s clearly just a grump!

Tuesday was our first visit to the ‘ketogenic clinic’, or so I thought and I was quite excited.  I assumed I’d meet other parents and have a chance to finally meet the elusive epilepsy specialist nurse (ESN).  It wasn’t quite as I imagined and simply turned out to be an appointment with the dieticians and the ESN.  The dieticians are fabulous!  They ring at least twice a week and are always on hand to answer any questions I have.  I have found them to be a valuable source of information so far.  They are happy with H’s progress and explained that some children see positive effects – i.e. a reduction/stopping of seizures even on lower than the optimal ketone levels.  I am reluctant to tell you how great things have been with H and his seizures lately – remember what happened last time? – but I had assumed that the erratic and low ketones meant that the diet couldn’t be responsible.  Perhaps it is though.  I am also impressed with H’s improved levels of alertness and interaction that we’ve seen of late.  Whether this is due to the diet or the lack of seizures I don’t know.  As I said to the dietician though – “I don’t know what’s causing it and quite frankly don’t care, I am just delighted that he has been seizure free for so long” (Sorry, can’t tell you how long, but it’s good!  :D ).

The disappointing part of the meeting though was meeting the ESN.  (You may notice I have removed the name of the hospital from one of the tweets above, as I don’t want to be unfair or unkind about someone who may well be doing a wonderful job for many other families.  This is just my experience, not a reflection or judgement on her either professionally or personally). 

In the early days of diagnosis, after the ‘life threatening’ label was attached and I became terrified of leaving the house, I tried to contact the ESN.  Our Paediatrician wrote to her at least once asking her to contact us, I left two telephone messages explaining why I wanted to speak to her and our neurologist also said he’d ask her to contact us.  I searched many websites for support and found the general epilepsy organisations weren’t really geared up for supporting families of children with such complex epilepsy.  I felt we were the only ones in this position, with a child who stopped breathing for such prolonged periods of time, and I was desperate to find someone, anyone that understood that terrible fear of not knowing whether or not your child would be alive in the morning.  Someone, anyone that could understand why I was so terrified to leave the house and could tell me how they got through it.  I thought the ESN could advise me or put me in touch with someone locally that understood.  We’re in a big city.  It’s a big hospital.  Surely somebody understood?  She never returned my calls though and today was my first time meeting her. 

Luckily, I am not that person any more.  I do go out.  I do take risks.  And thanks to the very lovely Rachel who put me in touch with Small Steps – I have found people who understand.  This support group, based in Durham have provided immeasurable support at a time I needed it most.  And, bless them, they even travelled a very long way to meet me and H, treated the whole family to a day out and, more importantly, made me feel less isolated and alone.  I can not sing their praises enough.  Their ESN came on the trip with them.  Their ESN visits all the families of children with epilepsy and knows them all personally.  Their ESN put two of the parents in touch with each other who in turn started the support group.  They were horrified that I’d not even met our ESN yet.  I realise though she probably has hundreds of families to see.  Maybe ESNs work differently in different areas so I thought today’s meeting with her might be a valuable opportunity and whilst I was irritated that she didn’t return my calls, I hoped that she would provide support from now on. 

I threw in casually (probably not that casually) that I’d tried to contact her on numerous occasions, that I’d felt isolated and had been looking for support.  She sat quietly while I spoke and when I’d finished began discussing H’s seizures.  She genuinely didn’t respond.  Didn’t apologise.  Didn’t explain.  Didn’t ask if I felt less isolated now.  She just completely ignored my comments and moved on.  I was flabbergasted.  She asked then about H’s epilepsy.  I’m fairly articulate and can explain his seizures in great detail, but she kept re-wording everything I said, despite never having seen his seizures in her life.  For example, I explained that he stopped breathing, “right” she said, scribbling notes “so he takes shallow breaths”.  “No, he stops breathing, completely stops”.  She looked disbelieving and said “so you can hardly see that he is breathing”.  I was fuming.  I went on to explain the colour blue he goes, how when attached to a Sats monitor his oxygen levels plummet and his heart rate slows and that I bag and mask him through every single seizure.  I think she believed me then.  As for support groups or being put in touch with other parents, that doesn’t look like it’ll be happening any time soon, though there is a conference/training day coming up in the next few months.  The meeting was rounded off with her constantly referring to H as ‘she’ and ‘her’ at which point I was so irritated that I couldn’t even be bothered to point out that he was, quite clearly, a boy!

Anyway, all in all, despite a disappointing meeting with the ESN, H seems to be doing well on the diet.  The dieticians have been superb and are even going to make a list of foods he can have as tasters whilst on the diet.  I am convinced that one day Little H will eat again (he lost the ability to swallow safely at 14 months after a bad run of seizures left him in HDU and he was sedated heavily for weeks – prior to that he’d managed baby purees reasonably well) so I am keen to reintroduce small amounts of food orally.  The dieticians will also ensure that everything is in place for when he goes in to have his gastrostomy in June; making sure the ward has enough keto feeds available and that pharmacy ensure that any pain relief or IV fluids he is given are low in carbs. 

xxxxx

So, that’s all for this week.  Sorry about the rant but wanted to get that off my chest.  Have a good week everyone.

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! 

xxxxx

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.

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

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

Side Effects of the Ketogenic Diet

Taken from: http://site.matthewsfriends.org/uploads/pdf/FAQ-2010.pdf

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 1^st 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 2^nd 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 4^th April: #ketogenicdiet day42 dietician thinks erratic ketones (0.8 this morn!) due to pain med for teething. Drop maxijul when using them #epilepsy

xxxxx

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.

 xxxxx

Ketogenic Diet: Week 5 - Can Daddy cope alone?

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

#Ketogenicdiet tweets for the week:

Thursday 22^nd 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.

xxxxx

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.

xxxxx

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