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Monday, September 16, 2013

Comradeship or lonely furrow

It is amazing, sitting in a ward where everyone has there own problems, that people are sharing their stories. It is like the collective strength is greater than the some of its parts. In reality, no one has enough energy to actually help others beyond some very superficial aid.

Of course, the mums are better than the dads at this. Mums share better, they are permitted to show weakness and will receive support. Dads just focus on their child and not showing any weakness...

I have had an epiphany, the mums way has some benefit. Now don't get me wrong, I have not been gossiping and swapping tales in the parents room. After all I don't need to. I am the one that comes with E and Es  mum - everyone knows them on the ward! (E could make friends in a phone box). I have had a couple of brief conversations, but I have looked elsewhere for my release.

If you look back at my blog you will see some sporadic posting with large gaps... But I have kept to my promise of daily posts here. Don't for one minute think that was a promise to anyone other than myself. This is my release, my aide memoire. This is me telling no one in particular my thoughts, feelings and fears. This is my parents room - with no faces.

I think you need that too. If you try to plough on alone, you will get stuck. Perhaps the mums have the best idea - it just isn't really me but I found my way. I have noticed that there is no jealousy. There are some little ones who are better or worse, who have more or less serious cardiac problems. No one begrudges you if your one recovers sooner. I do worry what people think, when E wanders around saying hiya and demanding cuddles. Do you know though, they all seem genuinely pleased, of course they wish it was them, but they are pleased!

The true nature of the vent of this blog came home last night. While writing it, I fell asleep in the pull down bed. So I didn't quite make a post every day but I'm sure you can forgive me that.

E has woken up fighting - you got your blood pressure over night - NO MORE!

Sunday, September 15, 2013


The first night in the cardiac ward was pretty good. E let the nurses know they weren't getting anything for free. I got some sleep - but I'm not craving noise like I was yesterday! So as I sit with E in the early morning light, looking out over Lambeth palace gardens I have decided to write a post that will no doubt bring a tear to my eye. You have been warned.

E's Nan made a request that she had Angels by Robbie Williams played at her funeral. I'm not a fan, but there was no question we would play it for her. Now that song holds a very emotional response for me. But for some reason the song spun round my head yesterday as I was able to relax a little about E.  Here's a little bit about what came with it, which may not fit with your beliefs.

There are a lot of people who made E's family what it is, who he never met. They never got the joy of his smile or the cuddles. But I think they may be some of the most important people in E's life.

I envisage a group of guardian angels just for E. If I'm honest, I think he needs them. I see them organised by F (a brilliant family man who I only knew for a short time but whose spirit lives on in my boys adoration of their cousins). A would offer some muscle and make sure no one took themselves too seriously. There are too many to mention here.

Special mention though goes to my Mum, E's nan. I have always told my boys about nanny Y, and that she is an angel. I tell them she would have loved them very much and know she would enjoy the challenge of another generation of boys!

So what is her role in this army of angels. In my head she's right there with E when I can't be. In my head she hold his hand and strokes his head when I can't be with him. She keeps him safe when he most needs it. A wonderful carer to all her boys when she was with us I find comfort in the idea of her giving him peace in his hardest times.

On a happier note, E's favourite nurse is back and he's started to make friends with her a little bit (he stole her calculator!). More importantly, E's mum is close and promises coffee!

Saturday, September 14, 2013

A day of mixed feelings

A day which started with needing noise, so I thought about my daily post whilst walking down the deserted corridors with the iPod up loud! (My choice for the day, Ash: walking barefoot). I thought a lot about the care E has had but wanted to focus on ICU. A place you will see if your child has heart surgery.

ICU is the place you want to be cared for in. The nursing staff are one to one with patients, often handpicked for specialism's which a given patient may need. The doctors are the very best and work as an amazing team where egos do not last (special mention to Andrew who gave me so much confidence in every element of E's care). No questions is unanswered or unaskable. Parents are part of the team (because you know your child). E had a bed space which could infuse him with 11 different products, help him breath, monitor his vital stats, and charge my phone, at the same time!

However, ICU is only for the most in need, you need to accept that, and be thankful that you had it... I have heard a lot of moaning from people about the team "not knowing what the problem is" etc. Paediatric ICU. They are with patients who cannot communicate and are trying to navigate by numbers and feel. I think they're awesome!

E had some very erratic blood pressure issues in ICU. The team were trying to find a solution. It was the 4th on the list they tried that worked (blood transfusion). They would not give up and were not letting him go without gaining some control.  He was in need, he was in danger and the checked everything.

BUT, the days in ICU are always numbered. To go home you need to get onto the ward. To get you on to the ward is the aim of the whole team who work there. Not to the detriment of one child over another, towards the ultimate goal.

So it is with gladness and sadness that I can announce E is on the road to recovery. He has left ICU and is with his favourite nurse (also E) on the high dependency bay on the cardiac ward.

To the ICU team at Evelina London - my son is alive today because of your caring and diligent work. He is on the ward today because you managed the problem until you found the solution.

On another note E has made his mum and I evaluate an area in our life summed up by an adaptation of a phrase: "receive and ye shall give" ( perhaps the wrong attitude but better late than never). In a return for me and a first for E's mum, we are going to give blood. Who knows where would be if someone else hadn't...

Friday, September 13, 2013

The unfamiliar side of the familiar and our medical miracle

As a journey into the unknown, the last 24hrs have been strangely familiar to me. Pre op prep, the never ending wait, the moment you're told he's out, the mass of wires and machines, the desperately caring nursing staff, the doctors who get that you want them to translate what they just said.

Last night was slightly unfamiliar also. Last time E had heart surgery he woke up with a bang, extubated himself and removed a couple of lines in and was sat up watching Fireman Sam by breakfast. This time was different: they obviously had a struggle before we got to see him; the balance was only found by morning; he still had the breathing tube in they were still trying to sort excessive draining. He's not sat up for breakfast, he still looks like an extra in a hospital drama (non speaking part). Deep down, E is there, he has enough drugs to down a large horse and he's still trying to wave people away - with heavily splinted arms to stop him playing doctor!).

To put this in perspective, a small tale of last time. When he woke with a bang, I thought I was watching the end and just grabbed his hands as medical professionals rushed around him. My body went in to shut down and I was trying to get on to a seat - but I would not let go despite the medical professionals trying to release my grip. I wanted E to know I was there. Inevitably the blood oxygen balance tipped and I went down (mock me if you wish, I still came back for round 2). My first thought when i came round was to get on my knees to be back with E. This s time I readied myself and it was a calmer experience, despite, or perhaps because of, E being in worse shape...

So medical miracle? It may be over stating, but I don't think so. His surgeon has never seen what was in E's aorta - no one has - they have sent it to the lab. They all seem to agree that E was quite lucky to make it to surgery. They seem very surprised that he showed no symptoms - but he was bouncing away on the trampoline last weekend. As an aside, all of this made me realise I was part of a new community - on hearing that the surgeon would be reviewing all of his WS patients to write up what had been found, I said that I thought any findings would be very welcome by the WS community. You see, it is all about our little medical miracle, but everything they find out might help M, C, L, A and all of the others at any age!

So in my head he is tough, resilient and not just a bit of a miracle. At an average of 1 open heart surgery per year of his life so far, he's a miracle who needs a stern talking to but we'll get to that later.

To any WS parents out there, keep every echo appointment - E may not have made the next one.

As a postscript to yesterday, where I hope I credited our support network, we received word today that a lovely friend of ours will be taking part in an obstacle course race called Tough Mudder next week. She is doing this in aid of the Williams Syndrome Foundation. Why? Because of one man, E. So it is true that the ladies can't resist a scar. Please support if you can - it may fund the next cardiac research coming out of some unusual findings in surgery... Who knows?

Thursday, September 12, 2013

We are waiting, we are waiting...

Mostly in to theatre nearly 3 hours ago. We do not expect to see him inside another 4. We wait...

The greatest fear I have is that the last thing E will know is me restraining him, while the mask is applied for the gas. My greatest hope is that he remembers the last words said to him while awake. "I love you" from his mum and "keep fighting bubba" from me.

I can't dwell on that today as it's a bit rbed a bit of the the moment.

So the business for today is something I have read a few things about recently. The reaction to the news that you have a child with special needs or needing major surgery. "I don't know how you cope". This came to mind when a new colleague was asking about E and repeatedly told me how they didn't understand how I could be so solid about it. They didn't understand how I could be so strong and how I could carry on. I will now discuss my take on this.

Firstly, I do not consider myself strong - I would like nothing more than to curl up in a ball and wait for someone to tell me its over. E deserves more than that. He's the strong one. He is the only one who really carries on like nothing is happening. He will need help, not want it, and that help comes from me and his Mum.

Secondly, our "strength" if that is what it is, does not just exist. It relies on support and foundation. The way we were raised, the family who are there when we need to vent, take a break, or just remind ourselves who we are. Our friends who have never faltered and in my case have needed to give me the kick I needed to bring my family through its trials.

Most recently, the support of complete strangers who have never met E, or us. The wonder of social media has seen E prayed for and sent positive vibes from around the world. I cannot explain how good that makes us feel, that it's not just us on E's side.

Oddly, today I spare a thought for the other people in E's life. His nanny L who claims she has the best boss in the world because of the greeting she gets each morning. His worried grandparents whose feelings I cannot fathom (that's a generation they should never worry about seeing like this!). His aunts and uncles and cousins, separated by hundreds and thousands of miles. Mostly though his brother C. Himself a little boy, who tears up at the mention he won't see E because he needs an operation. Who has a droopy bottom lop when he tells you he will miss E.

This brings me back round to the functioning thing. There is no choice. E and C are our reason to get up on the most difficult mornings - this morning for example, E decided to talk to us through his monitor from 4.30 and C woke at 6 and came for a cuddle in bed - quite literally our reason to get up. Functioning is a difficult thing at times, but I guess we are.

Well that wasted a half hour! I imagine the next post will come when we have E back and I've caught an opportunity to grab the phone.

Wednesday, September 11, 2013

"Never tell me the odds"

This post is going to be a departure from the norm for this as I feel I want to document the next few days. So I will be posting at least daily from today until E leaves hospital.

On that note, the decision is that E will have open heart surgery, for the second time in 6 months, tomorrow.  Since we were told that, a week ago, I feel like I have just about stumbled through what absolutely had to happen.  A variety of appointments, seeing surgeon etc etc.

So we reset the clock, we get C packed off with gaga (not lady) for the weekend and nanny looking after him before and after school.

I thought I'd try and blog this for a few reasons, firstly that I want to be able to look back at this. I can now say the memory fades. I forgot how bad the knot in the stomach is. I forgot how endless the waiting feels. I forgot how much I ache to be allowed to lay on the table myself. However, I do remember asking for advice of what to expect and what the days in hospital are like. So, I will hopefully help a few people one day through detailing this experience. Odd that the next few days do not feel like a journey into the unknown, rather a familiar and unwelcome path...

So, to the title. E's surgeon, as he must, explained to me the risks in detailed percentage terms. Risk of death, risk of brain injury etc etc. I resisted the urge to quote Han Solo, "never tell me the odds!". So it is with this, that this dad is off to navigate this particular asteroid field.

In the long wait tomorrow I'll check in about progress and the inevitable " I don't know how you're even functioning".

Ready to roll the dice one more time!

Wednesday, September 4, 2013


Right, once again, a long break. This time,we we dealing with the small matter of open heart surgery for little E. He had a repair of his supravalvular aortic stenosis done in March. Cannot fault the team, our support network, C or indeed E. C was a brave big brother who shed some tears but did everything that was asked. He even accepted that he couldn't give big squeezes so substituted a toy and cuddled E's foot for a month... E himself was discharged 4 days after surgery! ⁴ days after open heart surgery.

The last few months have been tough and exhausting, but E was back up and at em fully for our summer holiday to France. . When we came back, we went to his regular cardiac clinic fully of positive thoughts - he had been fixed! However, what we were told knocked us back. Scar tissue was causing a problem and . A big problem! So climbing back on the merry go round, we waited for MRI appointment and that confirmed the need for something to happen...

So now we wait - not for long - this time its urgent. Not sure what it is yet either astthey will try to balloon the area but if it doesn't work they will go open again. So, blind to what to prepare for awaiting the call to let us know when..

So why the title? The title is back to my music theme. A song by Chumbawumba from the 90s. The important lyric here is "I get knocked down, but I get up again".  We can't falter, E deserves better. We can't stop, C and E need more than that. We have been knocked down and we're getting up and dusting down and moving forward. That might hit some more bumps but there is no option.

That Ironman seems easy now...

So now we wait, not long - this time its urgent - and not sure what for. They will try to balloon the scar tissue,