whatiwastryingtosaywas

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

Month: February, 2013

Shit my pants much (sung to the tune of Smack my Bitch up)

Heart stopping moments abound. Of course, it’s be just too beige to have an easy slide into the admissions office on Tuesday, no?

Sitting on the couch, cuddling my favourite person yesterday when I noticed that the beds of his fingernails were blue. I think the blood that had been swimming around my feet for almost six weeks suddenly rushed back into my head. Dialled our emergency paed and were told that if everything else was okay, we were to relax and bring him in for a check up this morning at 8.

Not sure if I’ve mentioned it but the ahem’ing man from the hospital is Hudson’s temporary paed – I like him well enough but I just can’t make peace with the way he says important things in a mumbled and hurried fashion, the way he talks over me as I try to ask questions from a very scared place and the way he uses big terminology as though I just finished my doctorate in paediatric cardiology. It’s a tough decision cos he’s the man who saved Hudson’s life effectively but can I stick it out with him based solely on this?

Anyway, in much the same tone as he’d told me not to panic way back when, he told us today that the blue beds are a sign that we’re heading into failure territory – albeit slowly. What does that mean? Failure? Slowly? What. The. Front. Door. What if he kicks into quickly? Why are my eyes rolling into the the back of my head.

🙂

We’re still home, he’s still home. Surgery’s still set for Wednesday. We were properly panicked but are now forcing ourselves to breathe. We had our six week check up booked for tomorrow and are keeping that appointment so as to check on him again but hells teeth.

I suppose he is our son and therefore will not go anywhere quietly or to schedule. Gotta love the good old stubborn-arse I’ll-Do-As-I-Flippen-Please Slater-Smith blood.

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”…

Hudson’s story (a twist in the blog)

January 16th. The day before my 36th birthday. A Wednesday.

Almost a day like any other except for the fact that I was in hospital, it was two days after the birth of my son (the most perfect little boy I’d ever dreamed I could help create), I was sitting in my room with a small, ahem’ing little man and the blood that was supposed to be in my head was rushing around near my feet.

The small, ahem’ing little man had just come to my room to check my son, as the hospital paed’s do on a daily basis while you’re there, and had told me he’d found a problem. Hudson’s father had just left, most unfortunately, to walk his mother to her car and I was alone, hearing what I though was going to be the worst news I’d ever know. Dr Richards had found what he thought to be a heart murmur, which meant Hudson had a hole in his heart. Bright side? These things tend to fix themselves. Dark side? He felt strongly that we needed to get Hudson to Dr Danski to check his heart, do an echo and a host of other tests, just to be sure.

He left to make the necessary arrangements flinging a “try not to panic” at me as he left. Really? Try not to panic? This little man, who has had me falling solidly in love with him within seconds, was not well and I’m not to panic? You’d have better luck telling bears not to shit in the woods or telling caged elephants not to ultimately lose their minds and kill people.

Three hours. We sat and stood and walked around Hudson as he lay naked, save for his nappy, on a tray under a not working heating lamp, while the Paediatric Cardio tracked his heart movements, scanned his heart and made chilling noises with the back of his throat. Believe me I love Dr Danski today but he has the bedside manner of a lamp post. Oh, and the blood I was talking about earlier, had still not returned to the rest of my body.

Two hours forty minutes in, Nick asks Dr Danski if what we’re looking at are the four heart pockets. Danski says yes. Nick asks if everything’s okay there and I want to hit him. “Stop asking questions!!!!!” my brain screams as my eyes see Danksi shake his head and make an “um…” noise with his face.

Three hours later… the good doctor lets me dress Hudson, asks one of the NICU nurses to keep an eye on a now sleeping child as he draws us a picture of a normal heart and then a picture of Hudson’s. There is a problem with that sentence for those of you not tracking well.

So the “worst possible news” I though couldn’t get worse just a few hours earlier was about to turn into its bigger, uglier cousin. Terrifying news. Hudson has what he calls Truncus Arteriosus. Instead of having two arteries (one entering his heart with oxygenated blood and one exiting with deoxygenated blood), he has one trunk and the blood is mixing. He also has a large hole in the ventricular septum.

Those of you interested enough to know the full details of what it is can click on the link provided, there is much detail there with pretty pictures and even I understand what’s going on now.

Dr Danski gives us a high level overview – says Hudson needs surgery, which will see them (Professor Kingsley and his team at Sunninghill, another blessing all on its own) create a second artery, fix the hole and insert an ox valve to manage the blood flow. He then asks us to come and see him in his rooms but says Hudson’s colour is great and he’s eating, which means he can go home with us the next day as planned. We find out later that this is an incredibly good sign as most TA babies are diagnosed at birth and go straight to ICU from there. Our kid is strong and healthy and perfect for right now and we can take him home and live a normal life for now.

I spend the next week or so asking people not to feel what they want to feel, which I believe will be tearful and selfish and sad. I ask our family not to cry, not to be dramatic about what’s happening to someone else, to please be as positive as they can be about Hudson’s future. I believe in good energies and feel that tears will only bring negativity to my son and his heart.

It doesn’t sit well. I’m sure of it, but people are patient with me and it works. I have never felt more positive about how this will end because I know in my heart that I simply won’t accept a less than positive outcome. It’s that simple. My son is going in for a tune up and he’s coming out just fine.

We also spend the next week visiting with and speaking to parents. It’s amazing how you find them. How quickly your support circle grows. I’d never even heard of kids with heart defects before and here were four or five parents, ready and willing to talk to me about their experiences. I can’t thank Mandy (our hospital appointed audiologist, would you believe), Debbie, Ceri and Charmaine enough for their advice, their stories, their pictures, their time.

Our visit to the doctor’s rooms a few weeks later ends with the same news. Nothing has changed. Only now, we leave knowing that he’ll be undergoing open heart surgery on February 27th . Bad news? He needs surgery. Open heart surgery. Open heart surgery. He’ll be six weeks old. Open heart surgery. Good news? We don’t need an ox valve, which was a very worrying part of the surgery as we’d need bigger valves and more surgery over the next few years and now we don’t until he’s in his teens.

The need for surgery is the only bad news. Everything else is good. Hudson’s gaining weight nicely (we want him up to 4.5kgs ideally by the 27th), his colour is excellent (not a stitch of blue or jaundice to be found), he’s “anatomy is good” and mortality rate under these conditions is five percent, which means he has a 95 percent chance of coming out of the surgery without complication. The surgery takes around six hours, on average, from there he’ll go into recovery in the ICU, where he’ll stay, being drip fed and strapped to the bed so as not to remove his drips, for up to a week, maybe longer depending on his specific progress. Then he’s into general ward for two days. After that, from what we’ve been told, they send him home with a box of panado and a slap on the back.

Sound too simple? It’s not. Adults don’t generally deal well with heart surgery. Children don’t know any better. They don’t know to worry and stress and feel sorry for themselves.

They live so solidly in the now that what is happening to them is just happening. There’s no baggage or rubbish or bad/negative feelings. They recover. Just like that. They recover.

So, on the 27th, life changes again. Life becomes even better than it was before, if that were even possible.

Just as an aside, I don’t know why I took a month (yes, my son is a calendar month old today :-)) to talk about this in a public forum. I knew Facebook wasn’t the place but I also know talking about stuff and sharing helps raise awareness and will increase the prayers and good energies we so honestly want people to send for him today and every day until he’s back home safely. So, once again, the blog has evolved.

I only ask that people not use this as an opportunity to weep – use this as an opportunity to learn about his condition, to see how fantastic his surgical team is (I will write more about them in future blogs), to find out exactly how positive everyone is about how things will ultimately settle. He’s healthy. He’s strong. He’s getting porkier by the day and he’s going to pull through on the 27th with such strength and personality, he’s going to simply blow everyone away.

PS: Always time for a postscript. On another note, I am humbled. Humbled at how giving birth to a baby has changed me. How in love I am. How important he is. Humbled. From someone who didn’t get kids or parents to someone who couldn’t imagine ever not being a parent to the most amazing little kid she could dream of (I’ll write more about this in future blogs too :-)). It’s extraordinary. Simple extraordinary.

The journey… in video