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.