10 Mar 2017

Alex's sleep apnoea

I have been meaning to write this post for weeks now, but at the same time have been putting it off and off and off. I guess writing about Alex’s sleep apnoea diagnosis doesn’t constitute the most pleasant of posts, and I have been trying not to think about it all too much as it’s such a worry. But nevertheless, I feel I ought to share this story, because if it might help someone else, then that’s worth it, isn’t it? 

In January my little Alex was diagnosed with severe obstructive sleep apnoea. It came as quite a shock, I’ll be honest, even though we had been expecting the outcome, having waited to be seen by a consultant for several months. We just did not expect the severity of it. But I’ll start from the beginning.

Ever since Alex was a little baby, he’s snored. Every night, and very loudly, like an old man. I mentioned it a few times to the health visitor at check-ups, but I was always given the standard answer “some children are noisy sleepers”. So, we kind of accepted and lived with it, and – naively and stupidly in hindsight – adapted an “Aw, bless him, such a noisy sleeper, snores like an old man!” attitude. Now I could kick myself so much for it and that we weren’t more insistent with the medical staff at our GP surgery to check properly and pursue it. But I honestly never even knew that small children could have sleep apnoea (apparently between 1 and 3 per cent of children suffer from it, though they tend to be older). I had only ever heard of it in the context of old, overweight men.

It wasn’t until we went away for a weekend with friends last summer that we realised that actually, no, this isn’t normal at all. All of our friends commented on the gravity of his snoring several times throughout the evening/ night after we’d put all the kids to bed, and my friend Miranda then told me about her friend’s little boy who had been diagnosed with sleep apnoea and needed an operation. That’s when the penny really dropped, and the day we got back from this trip I instantly made a doctor’s appointment. On examining Alex’s throat our GP confirmed that Alex’s tonsils and adenoids were significantly enlarged (even when not infected) and touching, which is an indication of an obstruction which can cause breathing difficulties at night. She referred us to a respiratory consultant at the children’s hospital. 

To cut a long story short – the initial referral was lost, and after a lot of chasing, complaining etc. and nearly seven months later (I know waiting times on the NHS are bad, but I had no idea that they would be this terrible when it comes to children!) - we were finally seen by the consultant in early January. In the meantime, an agonising wait for us ensued. Alex’s sleep pattern continued to be disrupted and his snoring severe.

The typical symptoms of sleep apnoea are loud snoring, frequent waking at night due to a lack of oxygen, lots of coughing and choking as well as irregular breathing with long pauses in between each breath. In Alex’s case, this is to the point where it feels like he’s stopped breathing until after what seems like ages, he gives out a violent snore and finally catches a breath, which is really scary. John and I are forever hovering over his cot at night to listen in on him, nudge him, and make sure he is ok. He is also very sweaty during sleep, which is also a symptom of sleep apnoea because the heart rate is raised due to the physical struggle to breathe. And he generally just breathes through his mouth, even in daytime, which makes him sound a little bit nasal.

Sleep apnoea can impact on growth, as kids grow in their sleep, and leave them tired, cranky and irritable in the day. The latter isn’t so much the case with Alex, because he’s remained a happy little chappy, but some mornings he looks absolutely drained, and his daytime naps can be as long as three hours at a time. Again, stupidly, I’ve always thought that he’s just a good daytime sleeper and likes his naps, but now I know that obviously my poor monkey is just trying to catch up with much needed ZZZZs.

At 2 ½ years old Alex is still in a cot, not a junior bed, and in a sleeping bag, instead of a duvet, because he frequently (and I mean, literally, several times an hour) wakes up at night, often crying, and tosses and turns in bed, ending up in all sorts of weird positions which further suggests he desperately tries to get comfortable and breathe. So taking the sides off his bed was just not an option, as he would fall out of bed several times a night.

Anyway, when the first consultant appointment finally came round, he confirmed that Alex’s tonsils and adenoids were huge and take up most of the space in his throat, and we were sent home with a capnocheck machine to do a sleep study overnight and to measure his oxygen saturations and carbon monoxide output. Whilst we had been briefly shown how to operate the machine and how to attach the various sensors to his finger and nose, I did think that I had done it all wrong when the readings started to show up on the screen.

Alex’s oxygen saturations were coming up as the low 80s, 70s and even as low as 60 (I understand that anything above 97 is considered normal), and his heart rate as very raised. I sat next to his cot, watching the screen on and off, for over three hours before I left it on for the rest of the night, and I honestly didn’t believe these were the actual readings. I assumed I had done it wrong, and when I returned the machine the next morning, I told the nurse – rather irritated - that the sleep study hadn’t worked at home and that they will have to get us in as in-patients for an overnight appointment at the hospital and have the professionals do it. She said she would see whether there was any usable data and she would pass on any results to the consultant either way.

A few days later we had a letter through. And it confirmed all the low readings that I had taken as faulty and diagnosed Alex with a severe case of obstructive sleep apnoea. We were urgently referred to an ENT consultant to discuss an adenotonsillectomy (the removal of his tonsils and adenoids).
At that point we were desperate to get this sorted for Alex. I think knowing just how low his oxygen levels get and how much his heart strains made it worse and made us even more worried about him at night.

I tried to enquire how long we would have to wait for the appointment with the ENT consultant – and what the parameters of “urgent” are, and I was told that it could be as little as four weeks, but could also be more than eight (just to get an appointment), and then a further wait of several weeks for the approval of funding and actual operation, so we could be looking at another four to six months.
It was then that we decided to get it done privately. We just wanted make Alex better and stop him straining so much at night. But much to my surprise I was told on enquiring that none of the big private health clinics do this operation on children under three years of age. In fact, no private clinic anywhere does it. Back we were to square one, and back on the NHS waiting lists.

We were feeling pretty deflated, panicked and helpless by then, I have to admit. There was literally nothing we could do to make Alex better.

Thankfully - and to give the ENT department at the children’s hospital credit where it’s due -  they did end up being speedy. Four weeks after the referral from the respiratory specialist we saw the ENT consultant last week, and he just took one quick look at Alex’s throat, the medical report and sleep study results and instantly approved the funding for the operation and has fast tracked us. Alex’s operation is now in less than two weeks, just under three weeks from seeing the specialist, and I am so so relieved – and absolutely petrified at the same time.

It’s quite a big operation for such a small child, under general anaesthetic, and even the thought of putting Alex under, handing him over to the team of surgeons and medical staff and leaving the operating theatre makes me feel weepy. Because he is so small and there is a risk of bleeding, we will have to stay a minimum of one night, but I’m actually glad about that. I would rather Alex stayed under the observation of medical professionals post-op than not.

I’m just trying to focus on the fact that this is a necessary operation, not something we choose to do, so there isn’t a right or wrong decision to make for us as parents. It’s out of our hands.
The consultant has assured us that the success rate of these operations is very high, and that hopefully, once everything has healed, Alex’s sleep – and with that his quality of life – will be much improved. This definitely gives us some comfort.

But right now, I can’t focus on much else than the operation and how it’s all going to go. And I’m so so scared. I know that there are worse things he could have, I know that, and I am eternally grateful and thank the stars every day that he doesn’t have a far more debilitating or life-threatening illness. But that doesn’t take away from the fact that the last few months have not been nice, especially for Alex, and that the next few weeks will be difficult. Alex will be in pain for several days, something that’s never easy to witness when it’s your child, and he won’t be allowed to nursery for two weeks due to risk of infection. It’s not something I envisaged having to go through with my little baby.

I just hope and pray that my boy will be ok, and that we can put this behind us asap.


5 Feb 2017

Alex at 2 1/ 2 years

Alex is now 2 ½ years old, so I thought it’s about time I did another update on him. When he turned two I decided that rather than monthly, I would do updates every three months from then on, but somehow I failed at the 2 ¼ mark, and actually a whole six months have passed since I published the last update on him.

Where do I start?  Well, what can I say, I’m absolutely besotted with him. He is such a ray of sunshine, he literally brightens up our days from the second he gets up with his cheeky grin, infectious giggle and crazy, messy hair that frames his ridiculously handsome face. Every day I want to shout “Stop growing up so fast!!” because he is developing and evolving so rapidly, and my heart can’t cope, I want it to slow down so much.

He’s fiercely independent and wants to do everything by himself and rarely let’s one of us help him, which can be a little tricky sometimes, as well as test our patience now again, especially when I’m in a rush but he insists on putting on his own shoes etc. But he knows exactly how to express himself, and protest (!) when he doesn’t want something, that’s for sure.

His speech has come on in heaps and bounds, he is repeating everything we say (and also in German), and can put together whole sentences. I’m often amazed at not only the amount of new words he now knows, but also the quality of them and some are big words for such a little boy. It’s funny, because we don’t always understand every single word that he says, and yet, we can almost have little conversations with him, which is just lovely.

He totally gets the concept of humour and he will frequently try to deliberately say or do something that will have us in stitches, he’s so aware of the effect of his jokes, gestures or grimaces. He likes Ironman and Spiderman, and loves impersonating them with a loud mock-yell, arms outstretched, doing a monster walk - it’s so hilarious.

He’s very clever and I’m often amazed at how well he grasps different situations or contexts or how he can put two and two together and react to things accordingly. He can also count to 16 in English, all by himself, without prompting or helping, and 12 in German, which makes me very proud indeed.

He is absolutely fearless, too. Not only does he run everywhere, but he is also totally oblivious to any dangers, and will always try to throw himself off swings or climbing frames that are way too high for him, or jump off things he’s not supposed to, and we literally can’t take our eyes off him, and not just in the endearing kind of sense. I remember that Becky was a lot more tentative at this age – curious, yes, but cautious at the same time. Well, Alex isn’t, and we’re spending most of our time keeping him out of danger. He so hates being small, he gets frustrated easily when he sees what Becky is able to do and he isn’t, and whenever we are at the playground or softplay or anywhere like that, he wants to imitate the big kids and will absolutely not stay on the toddler equipment, which can be another challenge.

It’s exactly for that reason that we got rid of the high chair a couple of months ago, as he was increasingly vocally protesting about being stuck in there and wanted to come out and sit on our laps, because he wants to be one of us big people, so in the end we succumbed. Now he sits with us on the dining chair like a big boy – well, he sits on the Oxford English Dictionary, which, at 2155 pages, is just about the perfect size to elevate him to the right height!

He can be very stubborn and strong willed, and we are experiencing our first taste of tantrums, talking back and not listening. For instance, when we say: “Alex, bed time!” he answers “No way!” (I have no idea where he’s learned that!). And often whatever I say or ask him to do is met with a resolute “No”, too. He therefore keeps spending regular stints on the naughty step and in time-out, which sometimes works, but not always. Sometimes he will sit there quietly, totally not bothered, other times he will try to escape, and other times he goes into instant meltdown, so it’s a little hit and miss.

We’re slowly edging our way towards potty-training. He has expressed an interest in the potty, he knows what it’s for and we keep one out, so he can familiarise himself with it, but so far he hasn’t successfully managed to go just yet. We’re not putting any pressure on him anyway – he’ll be ready when he’s ready, and I don’t mind him being in nappies, after all, he’s still my baby!

He’s also a terrible eater. He’s exactly like his sister, and honestly, I despair with the both of them. Whatever I cook, whatever I give him, he won’t touch it and instead goes off to play or asks for sweets. He is obsessed with sweets! He’s never been given an extortionate amount of sweets, but we have started to cut it right down, so as to not fill him up on rubbish, but he still won’t eat. At least he eats at nursery – apparently – so I really don’t know what I’m doing wrong. He absolutely loves his milk though, it’s the first thing he asks for in the morning and he won’t go to sleep without it at night. Again, I’ve tried to cut down on his morning milk, so he would eat breakfast, but he’s refusing to eat anything until he’s had some milk, so we’re going round in (vicious) circles on this one.

My little Alex can be challenging, stubborn and very hard work, but for every difficult and tough moment he makes up for with a huge amount of affection and love, and I can’t be cross with him for long. He is the most affectionate little boy there ever was, and is disarmingly adorable and cute. He is especially attached to me (and vice versa), though we are all head over heels with him, including John and Becky, who also can’t get enough of him. But I love the fact that he’s a Mummy’s boy – long may this continue! (and I can’t wait to scare off any potential girlfriends of his, when he’s older *mwahahaha*).

Unfortunately, we’ve had some bad news with regards to his health. He has been diagnosed with severe obstructive sleep apnoea and his oxygen saturations are extremely low at night and putting a strain on his heart and brain, which is very scary, so he is now on the waiting list for an urgent adenotonsillectomy.  I won’t go into detail on this on here but I will write a separate post on his condition, because we had no idea that sleep apnoea was even possible in kids (I thought only fat, old men have it if they sleep on their backs, but apparently not), so if this could be relevant to anyone else, then it’s worth sharing. I am terrified of the operation and my little boy going under general anaesthetic, but I’m trying to stay positive and keep a sense of perspective. Because as serious as this is, it could be so much worse, so I am thankful that we discovered it when we did and something can be done about it.

I am so grateful that we have Alex in our lives – and however fast he’s growing up, he’ll always be my baby! 

18 Jan 2017

My Goals for 2017

There’s something about opening a new calendar at the start of the year, isn’t it? Those crisp, white, unmarked pages, waiting to be filled with appointments, meetings, life events and other memorable dates. And 2017 is no different, though I’m always a little apprehensive at the end of each year about what the next 12 months might bring. Silly, I know, because obviously, nothing changes in the night from 31st December to 1st of January. 

And yet, it’s somehow symbolic. And even though it renders me a little nervous, I also kind of like the symbolism of the New Year and the fresh start it brings.

I’ve never been a big subscriber to New Year’s Resolutions. Which is why I almost didn’t write this post, and why it’s so late into January when I’m actually publishing it. I’ve intentionally not called it “New Year’s Resolutions” either; the below is more a loose list of goals and targets – “Life goals”, if you like, because most of these are not just for the next 12 months - or two or three, even, however long you define the new year - but for the long haul.

2017 is a big year for me. A big birthday is awaiting come September, so this year feels very significant indeed. The big 4-0 is looming. *Gulp*. How did that happen? Kind souls often tell me that I don’t look it, and boy, I certainly don’t feel it, but there you go. You can’t escape the numbers and dates on the calendar.

When I first wrote a post like this in 2015 (you can read it here if you’re interested), it was all about the physical side for me; getting fit and strong again after my pregnancy with Alex, losing some weight and finding my physical well-being. 2016, meanwhile, was very much about my emotional well-being, about being kind to myself, being happy and worry less (you can read it here). And while this is certainly  a work in progress, I do feel that I have achieved many of these goals of the past two years (ok, maybe not the weight loss, unfortunately, but I’m still working on it!).

So, 2017 is a little bit more of the same, though my focus is even more on my well-being and finding my emotional and mental equilibrium. Over the last 12 months or so I have worked hard on myself to grow a thicker skin and not let situations, people, circumstances, worries or else bother me too much. A few things happened in 2015 that made me question several fundamental aspects of my life, and I decided at the beginning of 2016 that I would never let anything like this happen and shake me again. 

And I feel that on many levels I have accomplished this. At the grand old age of 39 I feel stronger and more secure in myself than ever before – at least one good aspect of growing old! Apart from things that are beyond my control, like the health of my loved ones for instance, or political factors that affect my life, I now feel that I can take on and deal with most things that might be thrown at me, and that’s a nice feeling.

I am at a stage in life where I know what I want and I have a clear vision on how I will achieve it, even if it may take a little while and some serious effort. And on a few of these ambitions there is no compromise – I know what my bottom line is, what I can accept and live with and what not - whatever the consequences of my decisions may be.

I want this year to be about balance. Firstly, that elusive work / life balance, but also a Mum / life balance. The kids come first, of course, but I want to continue to put myself up there, too, and look after myself more. After all, how does the saying go? You can’t pour from an empty cup. And that means taking some time out when I feel I need to; being less of a control freak and handing over more chores and organisational things to John, which I somehow hog (despite him offering to deal with them) because of my warped view that only I can do them perfectly. 

Asking for help more, when I feel I need it. Listening to my "innser self" (excuse the corniness of this) more and taking a break or a breather sometimes. Doing things I enjoy. In the past two years or so, I have often felt close to burn out and overwhelmed with juggling a full-time job, two kids at different ages and stages and with different needs etc., household, family, life, worries and dealing with plenty of other things that life throws at you etc. and found it overbearing and a bit of a struggle. This hasn’t majorly changed, but the things that I can address, I will tackle.

But it’s not about the big things. It’s also about the small things, like actually taking the time to schedule in that haircut, and not just when it’s absolutely needed and I look like a tramp. Taking time for some pampering. Getting back into a better skincare regime. I used to spend a small fortune on posh cosmetics and skincare products, but since having the kids and living my life seemingly constantly in a rush, this has completely fallen by the wayside, and now skincare is more of a five minute job, using whatever I can buy in the supermarket, bar a few ultimate essentials like my beloved Clinique products. But as I will be 40 this year, I think I am more than justified in making fighting any wrinkles my top priority, don’t you think?

I also want to say “yes” more. Yes, to things that might be out of my comfort zone. Yes to spontaneous things that might turn out to be just what I needed. And yes to my kids, when they ask to do things that I'm not so keen on or when I'm distracted by chores etc. I want to say yes to messy play and not worry about the chaos that this will inevitably entail (though, judging by the shenanigans with finger paint last weekend, I may live to regret this. Go and check out my Instagram if you want to see what I mean).

I want to declutter and minimise my life. We have so much crap and unused stuff stored in the attic, cupboards, under the stairs, in the garage, in wardrobes and drawers – I want to rid ourselves of all this junk and focus on what we really need and create not just physical, but also head space.

I want to take more pictures of us as a family – and me in them! I hate so much how unphotogenic I am, which puts me off being in pictures full stop, apart from a few well angled selfies. But I don’t want to look back at this precious stage in my life, at the kids’ childhood and never feature in any of the images, just because of vanity. So, I will force myself to be in pictures and not just take them; and I will make a real effort to try and get proper family pictures too. After all, I’m married to someone with a professional background in photography, so there’s no excuse, really, is there?

By the same token, I want to film more videos. I’ll never be a vlogger, I don’t think I have it in me, but I am very jealous of the numerous mummy vloggers that I do follow and who have the most amazing, lively memories to look back on. So, whilst I will always prioritise living in the moment rather than just looking on from behind a camera lens, I do want to capture more vivid memories of the kids and what they are up to, so John and I can relive them in years to come, probably fiddling with outdated technology by then, and laugh at how Alex and Becky kept us on our toes (and embarrass them at their weddings, obviously!).

I want to control the anxiety that I feel and that sometimes can be crippling. Things like travel in an increasingly dangerous world, being away from the kids, panic over my future and what my status will be in the country I have called home for 15 years (thanks, bloody Brexit!), and worries over the health of my loved ones have put a bit of a fog on my mind at times and kept me awake for nights on end. But I want to try and not let this consume me, and instead focus on the good things. Like throw myself into planning our summer holiday and hoping that this might help with THE FEAR, complete the lengthy and expensive citizenship application in an attempt to safeguard my future, go back to Germany more frequently and be more present for my parents than I have managed to this year. These are all things that I can actively do and take control of and try to fight the demons of anxiety that can sometimes suck the energy out of you.

I also want to push myself more generally. I’ve made two commitments for 2017; one that will enhance my skills, and one that will improve my overall health, and I’m determined to give them both my best shot.

Finally, I want to stop comparing myself to others. This, too, is ongoing, and I would say I’m actually doing a pretty good job of no longer giving that much of a toss about what other people do, have, look like or think of me. Especially when it comes to social media, as it’s all very warped, edited and curated anyway and only shows off the best bits of anyone’s life.

But there are still times when I liken myself to others and feel like a failure. This blog is one of those things and a prime example. I follow so many great bloggers, many of whom are professional bloggers, and it’s hard not to feel inadequate sometimes. I’ve recently lost my blogging mojo a bit, mainly because I’ve started to look at other people, their stats and figures and started applying this to me. I put a lot of pressure on myself to publish the perfect post, and when I’ve not had the time to write it or take the pictures, I tend to just give up and not post for ages at all. Which in turn makes me feel even worse, which leads to a counterproductive cycle. But my circumstances are very different to everyone else, and other bloggers who blog for a living, which I don't. Ultimately, I write this blog for myself. It’s my brain dump, my diary and my memories, so I have to write when it fits into my life, not appease some imaginary deadlines that increase my stress levels further. Yes, I could sit here and write at 11 pm and late into the night and chase stats and approval, but that’s not what I want to do. I want to watch Newsnight with John then (I am old after all!) or a boxset, and try to enjoy the few childfree hours that I have when they’re asleep before I catch some much needed zzzzz myself. So I will post when I post, not put additional pressure on myself, and if I still have readers and a following left, then that’s a big bonus and I will be humbled and grateful for every single person who takes the time to read my ramblings.

I think I just need to be less of a bloody perfectionist. In so many aspects of my life. Because essentially, this holds you back more than it advances you. Sometimes things might not be perfect, but good enough. And I have to learn to see it.

2017 is a big year for me. And I’m determined to make it count.

© Fairies & Pirates. All rights reserved.