Cardiac Update


Many of you will remember, we left Starship Hospital on New Years Eve with the express goal of getting some more weight on him. John Artrip, his surgeon, wasn’t keen to do the Rastelli operation on him at the size that he was. I remember him saying that they wanted to get Albie either over 8kgs or over a year old before having to do the Rastelli. I also remember at the time that both of those goals seemed bonkerscrazyfaraway to me.

Well, we’ve arrived – at both of those places. Albie is now proudly sitting at 8.16kgs at 14 months. Its a pretty momentous place to get to. Its great to know that the operation is now a lot less risky than it was at the end of last year. Its a victory for Albie!

He has started to catch up a little bit in the weight stakes too. In December he was 1.2 kgs below the 3rd percentile which was the cause of everyones concern, then in February he was 900g below it, and now he is just 400g below it. Obviously reaching the 3rd percentile is a strange aim for most, but for this tiny-but-cute man, it’d be pretty cool to get on an actual trend line and out of his “Albie-centile” so we are quietly gunning for that to happen next.

So, the question on many peoples lips – when will he be having his operation?

The short answer – no time soon. 2012 seems to be suiting Albie very well, thank you very much.

The long answer –   Albie is ‘remarkably stable’ and so is now on the inactive surgery list. His oxygen levels are stable in the 80s and he is putting on weight really well. There is no need to operate until he is showing signs of struggling (poor weight gain, breathlessness, sweating) or his oxygen levels go below 75 consistently so until either of things happen, the bigger he gets, the better. They will be replacing his pulmonary valve in the operation, so the bigger he is the bigger the replacement valve they can transplant and the longer it will last him as he grows up. This in turn will mean he will have to have less open heart operations, so this waiting time now – while painstaking – is pretty important too.

So yeah, that is where we are at. Its a mixed bag of emotions. We are of course delighted that our Albie is doing so well again. He is surprising everyone by crawling about madly and pulling himself up to stand. He is a total joy and has a myriad of words in his repertoire – including mystifyingly accurate transport descriptors of ‘car’, ‘ran’ (van), ‘raa (bus) and ‘cruck’ (truck). A Boy he undoubtedly is.

But its hard to wait for the inevitable and I want to just get the Rastelli behind us. We try not to let  it sit over our heads but often it does. You can probably tell from the tone in which I write this that its sitting pretty heavy with me at the moment. Looking at Albie today oh-so-happy, knowing that he will tire again, knowing  that he will struggle for breath again and knowing that he will get sick again – knowing that, and just having to sit by and just witness it all happen fills me with such a sadness. Knowing what is in store for our beautiful Albinator is so hard.  What I would do to change what will have to happen next…

And then there are very real practicalities of  waiting for the operation that we also have to negotiate. Albie can’t go into child care until well after his operation and so its just Marcus’ wage and our mortgage and me, getting more and more potty at my continued domesticity. It really would be time for me to return to some kind of work if I could – my brain is not made for laundry alone. It really, really isn’t. This became obvious when watching the capoeira display at WOMAD. We were sitting behind the martial arts group, who were all dressed in white, their backs were our view. Marcus was entertaining himself by trying to guess which derriere was female and which was male, and I was simultaneously anguishing about the lack of skills some of them have at keeping their white singlets white. Some of their costumes were decidedly grey-ish  people! I know. It was terrible!

And then there is the UK – and Marcus’ parents there who would love to meet their newest grandson.  And oh how we would love to go too! But we aren’t allowed on long haul flights till after his Rastelli operation, so that plan remains firmly on the back burner as well.

I have sat on this unfinished blog post for a while now.  I am so much more proud of our good times together than my whining. But it wouldn’t be honest of me to not post this so thought I would pop it up.

Before I had Albie I was scathing of the lengths to which western medicine went to save individual lives when millions died around the world of the preventable. And now, here we are with our son alive today because of the wonders of such western medicine. Oh the irony. And yet here I have the audacity to write about the waiting time we need to endure before we get to the next free life-saving operation so we can go on a long haul flight?!  Wow. I mean really. I apologise on behalf of myself. Its naval gazing at its worst really, but it is what it is….

10 comments

  1. Sarah – you are not whining. You are just being the best mother that Albie could have. It is such good news about his weight gain and he looks so so happy. Yes he will need the surgery and it will be tough, but then he will be up up and away again. much love and hugs to you all. we have been thinking about you given our recent arrival, and we all understand how it must feel, but not really when it is not our precious child involved. Kia kaha

    • Thanks Helen. Yeah, totally, its great Albie is doing so well eh! I think that is part of the reason why I feel bad – for wishing that he wasn’t doing so well so we could get the operation over and done with. Its a daft thing to want to do! Sabha is the cutest, and I love the name too! xx

  2. Awesome. I love how real you’re keeping it. Peace out to you guys. When it comes to hard times, you’ve seen a lot but there is always something so beautiful you see too. Thanks for sharing both sides of the coin. Hopefully the flip to the stink side of it only lasts a short time and the good side shows its shiny face again and stays that way for longer than you expect. Lots of love always xox

    • Mwah! I feel so much happier already just for reading your comment Riria! You’re a beauty. And in other news – are you leaving our hood? I heard Ngaio is getting you two? 😦 xxx

      • Yes it will! On the 28th! Our new whare will be much bigger, even though it’s still a unit. First big kai at ours will be awesome. See you there hopefully! 🙂 Lots of love to you, Marcus and Albie. xox

  3. This is a wonderful update and although it is bittersweet it’s so great how much progress Albie is making. You are a strong, wonderful person and you don’t need to apologise for how you feel. The comment about how white the uniforms weren’t, made me laugh. I know what you mean about feeling like being at home affects you. I had several years of it and had to find projects I could do to stop me from feeling like my brain had turned into Weetbix. I usually felt it the most when doing things like cleaning up diaorrhea from two floors of carpet, or scraping food out of the floor…Your comment about Albie using the names for transport reminds me of the minute I realised that girls and boys are definitely different. It was when Louis started making all the noises associated transportation- Alyssa had been totally uninterested. xxxxxx

    • Thanks Helene for your lovely comment, that is exactly it – I fear my mind is fast turning to Weetbix. I cant think of a more appropriate cereal to describe the state of my nation! Hehehe. Need to get it working again for sure. xxx

  4. Hi – your blog caught my eye in Kiwi Mummy Blogs tonight cos of the title cardiac update. I have a 4 year old boy who was born with TGA and a VSD – no stenosis at the time but will most likely need a valve replacement before he is 5. He had the switch operation at 10 days and further open heart surgery at 1 year. I just wanted to encourage you by telling you how absolutely amazing the cardiac surgeons are at Starship. Your boy will be in the best of hands when he finally has his surgery. Waiting for “the call” for surgery is the hardest thing, it feels like life is on hold. I hope the waiting doesn’t get too hard.
    Rosie

    • Hi there Rosie – thanks for commenting, and its so nice to hear of your experience and to read your encouraging words. We haven’t yet had the arterial switch, as that will happen in the Rastelli operation, but he has had a shunt operation, two caths and a balloon septostomy. We ended up spending quite a bit of time in Starship last year, so we do trust in the teams there completely – you are right, they are sooooo great.
      Do please stay in touch – it is great to know of others in NZ going through similar stuff. Is stenosis developing in your boy? Is that why a valve replacement will be needed? Is it aortic or pulmonary? How quickly did it develop and what monitoring picked it up? Too many questions! Sorry! xx Sarah

      • Hi again! Yes stenosis is developing in my boy – in the pulmonary artery (he has had a patch put in his artery and 2 balloon septostomies) and the pulmonary valve. It is developing slowly and has only been picked up through routine echos. It doesn’t seem to ever affect his quality of life.
        I will subscribe to your blog so I can keep in touch. It’s always nice to share similar experiences. Here is my email too in case you feel like contacting me at all. Maybe one day our paths will cross at Starship!!
        roddandrosie at gmail dot com

        Rosie

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