Medical update

We have known for a while that Albie is on the surgery list for his Rastelli operation to happen sometime between 19 December and 19 February. With his oxygen saturation levels in the 80s, we had imagined that late January/early February was on the cards. But at the same time, we have seen Albie tire recently so we were starting to wonder just how tired our boy would get waiting that long.

Its such a strange place, to be staring down the barrel of an what is an inevitable destination, and yet not knowing when we will arrive. So we hoped Albie’s cardiac review at Wellington Hospital yesterday afternoon would give us a gauge of what we can expect next.  And it did.

Dr Farrell didn’t take long to let us know that Albie’s need for surgery is semi-urgent, and he will be recommending to Starship that he gets prioritised. I knew Albie had been growing slowly. He is a dot no doubt – 6.4 kgs at 9 months( thats 14 pounds for our UK people), but I thought he was doing okay. Well, he was quick to put that idea to rest – saying that he had hoped that his ‘aggressive feeding regime’ would have resulted in much larger weight gains.  He added, that on his current trajectory, developmental delays are quite probable. This was a shock to hear as well.  Brain development is slowed, and different,  in kids with complex congenital heart defects like Albie. It is caused by both the extended time of low oxygen levels prior to surgery and also the time on bypass when he has surgery. Albie needs to start growing now, so that he can develop properly, and he won’t do that growing till after his Rastelli. So he is recommending we get up to Auckland and get it done.

So it was sobering, and scary. Entirely overwhelming. I often think I have a handle on all of this and then I get sprung and I am back in floods of tears wondering why our boy has to be dealing with this all. It will be fine, I know it will. But I want to show Albie how wonderful and beautiful this big world is. And its so, so, so hard knowing that just around the corner is an experience for him that is going to be so far from that, and there is naught I can do about it.  There really is such a thing as heartache – and I’ve got it bad.

Sorry that there is no positive spin to this update. I will get back to a place of gratitude I promise. I am thankful everyday – thankful for Marcus, thankful for Albie, thankful for amazing family and  friends. Thankful we live where we live  – where health care is advanced and also free. I’m thankful for it all.  Just in a funk this morning.

 

15 comments

  1. Sending massive hugs to the whole whanau – Albie couldn’t be luckier to have you guys. If you need anything at all, just say. Tess and Dan. xx

  2. oh sweet heart of course you are in a funk this morning!
    The sooner Albie can have the Rastelli operation the better.
    You can’t be strong all the time expecially when your childs health is in the balance.
    Love you sweetheart xoxo. Aunty Teresa & Uncle Roger

  3. oh sweet heart of course you are in a funk this morning!
    The sooner Albie can have the Rastelli operation the better.
    You can’t be strong all the time expecially when your childs health is in the balance.
    Love you sweetheart xoxo. Aunty Teresa & Uncle Roger

  4. Shux, I am a bit lost for words – that must have been quite a visit to the Doctor huh! You guys are just bloody amazing. What a massive, emotional, scary, difficult journey it has been and continues to be. Huge huge hugs and love to you guys, keep the faith and know that you are doing an incredible job. I am here always when you need me xxxxxxx

  5. Damn, not a surprise that you struggled a bit when you heard this. Thinking about you and your little darling and sending you a huge amount of hugs and love. Sorry I haven’t been on here in a while, but you are often in my thoughts. You are a most amazing mum and you are very much an inspiration to me.

  6. Oh guys, I don’t know what to say really, other than of course we are here for you if you need anything.

    A friend of mine really struck me with some words recently. She knew about some tough times I had gone through a while ago (clearly nothing in comparison with yours). She is religious and she said to me, ‘God only takes us to places he knows we can handle, no matter how dark or how hard…’ I think this is true, and I think that Albie had to come into this world, and that the only way it could happen was for you two to be his parents because you guys are probably some of the very few people who can handle it…even though it might not feel like it at times.

    Kia kaha, lovely people.

    Arohanui,

    C&C

  7. My son has his repair a little over a year ago and he’s done nothing but thrive. Sometimes I get choked up when I have to tell people, sometimes I don’t. I think that’s how it is as a heart mom. I felt terrible after we scheduled his surgery, but as the date drew near, I found myself growing stronger. Maybe it was a psychological response to what we were facing, who knows, but you can do this. You have to, and so you will, and you will do it well. I’ll be keeping you all in my thoughts.

    • Thanks Alyssa -you are right, we already feel stronger. Thursday just seemed to throw a left hook at us. It will be great to get the operation behind us and I can’t wait to see Albie thrive like your little man. Thanks so much for sharing your experience too, its great. xx

  8. Much love from the Bentley bunch too. We are always thinking and talking about you and how things are going with Albie. No doubt there are tough times ahead but you are a beautiful family and will get through it together. Never be sorry about feeling sad, its a part of what can make the good times even better and considering everything it’d be strange not to feel low sometimes! We all think you are all amazing anyway. Inspiring.
    Good luck you guys and know that there is a lot of positivity and love coming at you from across the seas. Jules & Tony. X

  9. Let yourselves feel bad and sad and cheated, you need to allow yourself to feel these things and let them out as they happen. These feelings are as much part of this journey as the positive feelings are. And ignoring them doesn’t make them go away.
    Soon you will be strong again and as Alyssa posted by the day of his op you will be ready to support him through this.

    But you don’t have to be strong just yet, so let yourselves take the time to process this grief for a bit, rant, rave, cry, throw things, go for long stompy walks and yell off hilltops, do whatever you instinctively need to do.

    And as the feelings of shock and grief pass and plans form let us know what is needed to support you through this time ahead. Cause whether the news is good or bad you are never in this alone, you have a strong net of support under you and now is probably a good time to practice a fall off the tightrope of coping and let yourselves be cradled for a bit.

    As for developmental delay? Albie has been such an acheiver so far, he seems to love proving people wrong. To date his development has been well ahead of most babes his age in lots of areas, its only energy holding him back on physical ones like crawling, so even if his op does knock him a little chances are he’ll still easily be within normal limits. And he has two incredibly motivated parents which is a huge asset in the recovery period. I have a very clear image of that cheeky smile and those sparkly eyes rushing around busy being a very normal, actively exploring, clever toddler.

    With much love, hugs, blessings, the brownshed crew.

    • Way to make me cry Anthea! Thankyou so much for such a lovely message. Feeling so much better today – relaxing in the sun/shade – at the beach and the playground. Good for the soul. xxxx

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