Speed bumps

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Albie is growing into the finest of young boys. He is sharp and curious and funny. He says all sorts of wonderful things. I wish you could all spend some time with him.

About a month ago, we were in Albie’s bedroom, I was sorting out clothes and the boys were playing with their toys. A super ordinary morning. Albie, all of a sudden, turned deathly white and froze stock still. He spoke quietly and gingerly, clearly trying not to move, “Mummy…….my heart is beating really fast.”

I rushed to him and put my hand on his chest. His heart was slamming out of his skin, as hard and fast as you can possibly imagine, and then,  just as quick as the panic rose in me, it was gone.

He has had six more of these arrhythmia that we know of since. He says it feels like dinosaurs.

We took a pediatrician appointment. She said, that arrhythmias can be nothing but that with his history it is possible some pacing nerves could have been damaged. It does appear to be electrical, as the episodes are completely unrelated to exercise and just happen randomly.

He had a Holter Monitor fitted on Thursday. That’s a 24 hour reveal device to record his ECG rhythms. Albie reckoned he looked a bit like a robot. He was amazing at not touching the wires and pads, even when they got itchy.

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The cardiologist will make a plan once the tape has been analysed. It is Sunday here as I write and we’ve not heard anything from anyone yet, so I am taking that as good news.

Hopefully it is nothing. He might be growing and he might have these arythmias for a while and then they may disappear. Or they might get worse and they might need medicating with beta blockers. Or, he might need a pacemaker. So we are in this very wide space at the moment. Might be nothing – or could be the start of something pretty major.

So, in the meantime whilst they get to the bottom of it, we’ve got some instructions. If he has an episode, we are to time it and if it lasts for more than three minutes, we call an ambulance. At the moment they only last for around 30 seconds which means that the heart is bumping itself back out of the fast rhythm to it’s normal pace pretty easily. But if it didn’t do that, than it’s likely he will have a cardiac arrest.

Beyond. Beyond. Beyond words on that one.

I asked if we should be limiting him in any way and they said not to. We are just trying our darndest to just let it be. If you’ve got any words of wisdom on how best to be chilled out about all of this, please pass them on to us.

And then, in other rather bumpy news, we took Albie for an eye test. I’d suspected for a little while that his eyes might be weak as he edges very close to things to see them properly. Yeah. Well – he has 6/60 vision in his left eye and 6/20 in the right. I didn’t really know what those numbers meant but basically 6/60 is the worse of the two and means that he can see at 6 metres what a normal sighted person can see at 60 metres. It’s at the outer limit of certified blind. I am astounded, and embarrassed, that it took us so long to pick up on it. We’ve been referred to a Childrens’ Eye Clinic to check his field of vision.

On the up side, he will DEFINITELY be getting a few pairs of spectacles and I think kids in specs are just about the cutest things ever. And now that we know how blind he is, we are also really excited to show him what the world REALLY looks like.

So yeah, all a bit bumpity bump over here at the moment. But despite these wobbles, we keep on thinking how far we have come and only feel gratitude. This has been compounded for us over the past few weeks, as we have followed Joe, one of Albie’s treasured heart buddies in New Zealand, through his latest heart operation and recovery. It got rough and complicated for him –  just like it did with Albie. We felt such a great helplessness, as they sat vigil with their boy through the toughest of times.  Joe went home today. His parents and loved ones, will undoubtedly be changed. These heart boys – they stretch our spirits in ways we could never imagine.

And it makes these speed wobbles that we have now with Albie seem pretty darn small.

In other news from our front, I am pleased to announce that Fred now has the Cutest Hat in the World.  Grandma bought it for him at the local Craft Fair and it really is quite the treat. Just in time for Easter too.

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So on that note, Hoppy Easter everyone. Be wonderful for each other xxx

24 comments

  1. Welcome to the world of The Bespectacled, Albie. Weird and wonderful things await you, like being able to read street signs that are miles away. If you’re like me and you like reading signs, it’s a wonderful thing to be able to read what’s ‘over there’ instead of having to wait until you’re really close up. Woohoo! Your parents are diligent and special.
    Sarah, it’s okay to feel embarrassed but we all know you and Marcus are stupendous parents. We shan’t forget any time soon. I hope the dinosaurs ease up on Albie soon.
    Just a thought, how did you manage to get through the hard times when Albie was in hospital? Is it something you could do to perhaps go back to those tools and resources and see if they work in this situation? I’ll be praying for you from this end of the world anyway. With all my love XOX

  2. Such cute pics of both your cuties! bumps are just bumps – and as their meaning may suggest, to be ridden over quickly and visible only in the rear view mirror! You’re all in such good hands over there with the medics etc and one more step along the way to claiming victory! Some homoeopathic Aconite 30c may be helpful in those ‘anxious’ moments Sarah – for you and for Albie too – helps with any sudden shock to the system- amazing first aid remedy. Sending mucho love xxxxxxx

  3. Long-time reader, first time commenter here…
    Can’t help you with the heart stuff but I can help you with the eyes! My eldest is about Albie’s age and has a lot of eye sight issues – severely far sighted, accommodative esotropia, amblyopia, anisometropia, and had strabismus surgery last year to help straighten his eyes so he can hopefully develop 3-d/binocular vision. There is a great Facebook page called Little Four Eyes that’s a wonderfully informative and supportive community of parents who have kids with eye sight issues if you want to join xx

    • Hi there! Thanks so much for letting me know about this group. We are thankful that the specialist eye clinic has found his eyes to be a bit wonky, and in need of glasses, but nowhere near as bad as we thought they were initially. Certainly not blind in one eye! Pretty long sighted in both, but not crazy, crazy bad(6/20 and 6/12). Fixable! A bit grumpy at the initial optician who sent us to the specialist with some pretty dire numbers in our hand, but happy that he doesn’t have a big issue with his eyes as well as everything else!

  4. Oh lovely. Thinking of you all, and missing you even more, so much that my heart skips a few beats too. Love you one and all XXXXX

  5. Huggles! If it’s any consolation Sarah my 3yr old eye test was fine and when next tested at 7yrs (when my teacher picked it up) I was not seeing the topline in the old fashioned eye charts and been legally blind ever since. So if family hx is anything to go by it may well have not been like this long (and you noticed Albie way sooner than Mum noticed me!). Eye function in children is hard to assess by observation as with a long standing or gradual deterioration they don’t know what they are supposed to be seeing so just get on with it.
    Re the dinsosaurs – yup scary, especially at this end as you are learning what (if anything) they mean. I see Aunty Shirley suggested Aconite which is probably more specific I was going to say rescue remedy. Will be waiting fingers crossed on results of the monitoring – did he have any episodes in that 24hr that you are aware of?

    • I’m sure we will chat about this next time we Skype anyway babes…..I’m hoping that there will be something they can do to improve his eyesight – aside from glasses, technology is getting pretty amazing these days xxx

  6. Hi Sarah – I worked with Marcus a little while ago and I’ve loved reading your blog ever since, even though sometimes I feel like a little voyeuristic, as I have never had the pleasure of meeting you or your small boys. But I do feel like I know you a little through your fabulous writing and gorgeous photography. Fingers and toes crossed for Albie and a banishing of those dinosaur feelings. Can’t wait for the cute glasses photos – he’ll love super cute and astound you further with all his new, detailed observations. Say hi to Marcus for me and Happy Easter and the start of spring – lucky you.

    Claire Gubb

    • Hi there Claire! Thank you for your lovely comment. Don’t feel voyeuristic, we write on here for all our family and friends and wider support networks, however they came to be! I think we picked up more than our share of cheerer-onners when Albie was really unwell, so there are a great stack that I’ve not met in person, but who I totally appreciate! We are very lucky for all the moral support we receive. I passed on your greetings to Marcus and he says “hi” straight back to you. Xxx

  7. My Dear Sarah a big love to you and Marcus and the boys. What a truly splendid family you are. Thank you for sharing so much with us in the most beautiful way possible. I am deeply moved by the honest way you express yourself and the courage you show in all these events – what a test of faith the dinosaurs are. And what an amazing child Albie is – I just love these photos of him all hooked up and standing proud. What a hero! I have been enjoying all your postings but this one deserves a response. Much love Gleni XXX

    • Thank you Gleni for your gorgeous comment – I can hear you in the words that you have typed here and I love that. I hope you are great. I think of you often as you really are quite remarkable yourself, you know! The unpredictability of the dinosaurs is the real test. Hopefully some answers soon xxxx

  8. Hi Sarah love and prayers coming your whole families way. Know too well what waiting can be like keep strong . if it helps to chat you are welcome to have a facebook chat with me . In the meantime take life step by step focusing on the day at hand . Google “Step by Step by Barbara C Ryeburg ” This poem was a lifeline to me when John was little and again last year when he had nearly a month in Wellington Hospital.

    • Thank you for recommending this poem Janice. We have found it very useful to focus on the present moment, and not look forward too much trying to guess what will happen next. Step by step indeed. Anything we imagine will probably be wrong anyway, and it only causes anxiety. Xx

  9. Hi Sarah, how scary those dinosaur speed bumps must be!
    I’d second both the rescue remedy and the aconite 30C suggestion for the shock of it.
    Both for the eyes and to help prevent further dinosaur attacks, acupuncture could be a huge help – especially with his previous heart surgery, it may just help to sort out the body’s confusion of what needs to grow and what not, and it can help heaps to soften lumpy scars that can pull during growth spurts. Julian Scott’s website is a good start: http://www.eyebright.me.uk
    He’s a wonderful colleague who I’d train with in a heartbeat if he wasn’t half a world away.
    Unless you’re near Bath and can see him directly (I have lost track of where you live, and no clue where Bath is to begin with), there is a practitioner listing on his site for acupuncturists who’ve trained with him. Also, check out the downloads section on the site, the eyebright method and massage (for the eyes, obviously), and the “Qigong for the Chest”. Since the rhythms of Lungs and Heart are naturally in harmony, anything that benefits the Lungs will benefit the energy of the Heart as well. Much love from Houghton Bay Road, Rebecca 🙂

    • Rebecca! Thank you for taking the time to share your contacts and knowledge with us. I read your comment and got rather excited about using some alternative ideas to assist Albie. I’ve had a look at the practitioners he has trained and there is one in Hebden Bridge which is about a 30 minute drive from here. I’ve emailed them so hoping to get Albie seen there soon. Thank you. It feels good to have something concrete to do that might help make things easier for Albie. I will let you know how things go. Love love xxx

  10. Oh those were not the speed bumps I was hoping for! Similar, but different than what we had with the heart stuff. Henry would report ‘tummy aches’ that were a racing heart. We told his cards, had a holter, nothing ever showed up. They attributed it to him being more aware of his heart beating rapidly, and since his usually came after activity, we wrote it off as such too. I think the fact that we labeled them tummy aches, rather than rapid heart rate probably didn’t help. I wish I had advice on keeping calm, that still eludes me at times. Just breathe, and make sure you feel really good about what his cards find/decide. I wish I’d pushed a little harder for answers to these tummy aches. H had a run of them from the time he was about 3 to 4 where they were a monthly occurrence, at least three or four times a month. Right now I can’t remember the last time he complained of one, but I’d guess the pacer moves him out of anything pretty quickly. I’ll be thinking about you and hope that all questions get answered and a good plan is established. And if you have to go the med/pacer route, we’re living it, and it is good, one you get past the shock, no pun intended.

    • Alyssa, I’ve thought loads about you and Henry. Did he complain of tummy aches prior to his collapse? It worries me that this will happen to Albie too. No arrhythmia were caught on the holster monitor, grrrrrr, so annoying, as he had had three in the previous three days, but his systolic murmur is louder and the right side of his heart is enlarged so he is being referred back to Alder Hey, which has a the big cardiac unit in. Liverpool. We’ve been told that both of these features might be within scope for what is ‘normal’ for kids like Albie so still remaining calm. Or trying to! Xxxxx

      • Sorry it took me so long to get back to you! Henry did call them tummy aches, but would point to his chest. Usually just letting him sit and take a few deep breaths were enough to calm things down. There was one that really scared me where I could feel his heart beating so fast. He was crying and sweating, actually he had two like that (usually he’d just say tummy ache and we’d make him sit). I called his cards, but they just wrote it off as nothing. I think it’s hard for everyone. No one wants to miss anything, but without it popping up on a monitor or during an echo, you don’t have much to go on. Other than gut feel. I’d push for what I felt was necessary and not stop until you feel satisfied. You see him everyday. You know what normal is, and what is not. Inconclusive Holters are annoying. Not that you want to find something, but when it doesn’t feel right, you want something that they can treat/watch/be noted. I hope you do get some answers that set you at ease when you head to Liverpool. I’ll be keeping you in my thoughts. I’m still on FB, and my email that I check regularly is in the details below if you need anything.

  11. Dear Sarah, what lovely support you have by sharing your life and thoughts with others. Very difficult with bumps. If you can keeping your eyes on a wonderful future and not allowing fear to prevent you from missing the moment you are in 🙂 I will be praying for you all. Angie

  12. Oh my, Sarah. Here’s to a steady steady rhythm. I’m sorry I’m only peeking in here now – life is at such a pace these days it’s hard to find time for important Internet reading. And – we are months behind on our own blog. But amazingly – our next post will be a bit like yours. Ruben had an episode in December – that we think could have been a similar fast rhythm. He was in the middle of a quiet activity in our house and he just stopped, turned grey and kind of fell nearly asleep. Stupidly, I didn’t take his pulse. They gave him a holter monitor but didn’t see anything. And we actually haven’t seen more symptoms. Since he’d had some afib in the past, they decided to do an MRI in feb to check on structural issues – but the results didn’t tell them too much. Anyway – for now we are just assuming all is well enough … keeping our eyes out for anything. Sounds like Albie’s is requiring more of a watchful eye. It’s a wollop, isn’t it? The return of everyday terror? Sending lots of love, heart mama.

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