whatiwastryingtosaywas

There's something wrong in the state of Denmark… and I think I may be it.

Tag: Kinsley

The hard part’s done…

In most cases that’s not true but I think in ours it is. The hard part’s done.

The surgery’s done. He’s still in a very critical period recovery wise but my child is just… so amazing. He’s breathing quite a bit on his own, they’ve removed all the drains and pipes save for the ventilator and feeding tube (which, where the ventilator is concerned, we expect will be gone by the time we go back for visiting hours later today) and aside from needing some blood this morning, he’s on the road to recovery. He’s eating expressed breast milk. Started at 2mls per hour and is up to 30mls every three hours although he’s been fasting for the extubation phase, which should be happening as I type.

I cannot say how small I feel around this boy. For all he’s going through, I will never truly be bigger than him. And I strive to be as brave. For the lesson I’ve learnt through all of this is how scared I actually am and how brave I should actually become. Courage is a gift he’s been born with and a trait I’ve lost over the years. But I’m reclaiming it, and the only reason I can do so is my boy.

Again, I just really need to express my ever expanding gratitude for all the wishes, prayers, thoughts and energies being sent to Hudson’s little heart all the time over the past few days and going forward. I hadn’t realised how large my team was until this time came upon us and I have to say, I’ll never feel alone again.

Thank you all so much.

He opened his eyes on Friday morning when I started speaking to him...

He opened his eyes on Friday morning when I started speaking to him…

no cords

All his cords were removed this morning (Saturday)

Poor little swollen hands…

But it’s gone down now. He’s more like himself now.

 

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When I started this, it had a different title…

I’m not entirely sure what to blog but I know I have to. I have thoughts rambling around in my skull.

I suppose what I should do is follow up on my promise to speak more around the team who’ll be working on Hudson next Wednesday. The only problem with this is, I can’t. Not from personal experience anyway, so I’ll share what I’ve found online in the meantime.

Professor Kingsley and his team will be performing the surgery. Thankfully, Discovery is covering the entire deal (when we first found out about this I wondered how they would, being that Hudson was not even officially a member yet, but thankfully, for all its faults, Discovery has shown up for the little guy and I’d hazard saying they should be counting their luckies cos I’d be making life hell if they hadn’t).

Prof Kingsley, or possibly Kinsley, has been operating in the field of cardiac/thoracic surgery for 45 years. I have not met the man, nor any member of the team who’ll be operating on Hudson, that little touch of joy only befalls us on Tuesday when we admit Hudson. But they have done much, including establishing the Walter Sisulu Paediatric Cardiac Foundation and saving hundreds of thousands of infant children’s lives. This team has been on Carte Blanche and has travelled the world to save children not to mention the charity work they do locally. I used to only support animal charities but will be adding the WSPCF to my list going forward.

What’s so shocking about heart defects is the sheer lack of knowledge. My OBGYN did no tests to check that my child’s heart was okay. We listened to it every two weeks or so for eight months but he found nothing worrisome. And therein lies the problem. It’s just not tested for. 1 in 100 infants are born with some or other Congenital Heart Defect (this link leads to a Pinterest page showing you the success stories of children who’ve been operated on for various CHDs, if you click through on any of my links, let it be this one. If you scroll long enough, there aren’t many cases of Truncus Arteriosus, in fact I’ve found four – three boys, one girl – it’s rare. You may also note how many children are born with “several CHDs” so we’re really VERY lucky and blessed to only be facing the repair of two defects, I cannot tell you how often I thank whoever’s looking out for Hudson every day for this) but people don’t know enough to ensure that medical staff are ready and waiting to address these issues the minute they’re born. Sadly, there isn’t much you can do in utero but a prepared team is better than nothing! Anyway, as angry as I was at my OB, I am not anymore. 1 in 100. This is something I should’ve been aware of and something I should’ve insisted they checked during the congenital defect scan at 11 weeks. This is when they check for Downs Syndrome, etc and CHD’s should become the norm going forward. We live in hope and continue in our efforts to raise awareness.

And that’s it. Aside from this link, which tells us what to expect before, during and after surgery, there is very little online that tells me statistics or anything I haven’t already read or been told.

I do want to end by saying thank you – to everyone who’s added us to their church prayer lists to anyone who’s said a small, silent prayer after reading a blog entry or sent their good energies out into the universe while thinking of Hudson. To every single one of you, thank you. I am grateful every day, all day and that’s the best I can be for now. Without you, I think I’d have fallen down by now. This is the toughest thing I’ve ever had to do and I can’t even own that because it’s going ot be tougher for Hudson and we have to keep strong for him.

As my friend Ceri Galatis said: It’s simple, you don’t know anyone who had a difficult start to life who *hasn’t* done something big in their lives. Hudson is going to be HUGE in Japan. Of that much I am sure.

I won’t write again until after the surgery. Keep Hudson in your prayers and thoughts, is all I ask of my loyal readers :-).

PS: The first title was “Seven days and counting” and the second effort was “Six days to go and all is well”…