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...

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?

www.justgiving.com/emma-sinden1

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.

"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!

Tubthumping

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,

Episode 6: Return of the William's Syndrome Dad

WOW! That time I really did take a long break. But, I'm back and hopefully will get back in to it. I've missed it if I'm honest, so I guess the experiment has some very non-scientific results.

Moving house, the London Olympics, E's mum being made redundant and getting a new job, E's mum starting new job, finding new nanny and finally Christmas have really wiped out the back end of 2012.

To ease myself back in, I thought I'd give that long awaited update on E.

E is a lovely little boy. He loves cuddles, but only on his terms, and one of his favourite things (excluding peppa pig) is bouncing on my tummy. He has gone mobile, crawling after his brother, and racing to the front door to greet new people. He can stand with support and cruise around the furniture, but shows no desire to walk just yet. He refuses to learn to sign but insists that you ask closed questions. In response "yeah" means yes and silence or a hand in the face means no.

We get masses of compliments about E, how cute and happy he is. These people are right, but somehow I find the compliments hard to take. I know this is because he has Williams, and I know they don't understand. No idea if it is my guilt at not telling them or just my fears of the long term issues that come with the cuteness...

Anyway, health wise, E has been doing OK with the odd interruption for coughs and colds, but no major Williams related issues. Well, that was right until December, when we had a cardio clinic. E has now been scanned and measured and poked and prodded (including MRI of his heart). The upshot is that he is likely to need surgery on his aorta. E has supra-valvular aortic stenosis (best described as a pinch point just above the valve).

This has come as a big smack in the face. One which I am not sure we were really expecting. Oh well, we find out the recommendation of the panel this week and until then E is getting extra cuddles and we are all celebrating Cs birthday!

Be back soon...

"Happy" Anniversary

When I wrote my post, a little under a year ago, entitled W-day 8th July, I really didn't know what the year would hold - well I now have a pretty good idea, having lived almost every last minute of that year.  I guess I have actually been the Dad of a child with Williams Syndrome for nearly 15 months - but I didn't know it until 8th July 2011.  So what has the last year brought:

Well, fate brought about a big gap between this and the last post - actually it was BT, not fate. I have had no broadband and a load of jobs to do - we moved house.  We moved house in order to provide a long term home for E.  In theory we will not need to leave this house unless we become too old to get around it...  I would definitely not be sitting right here had it not been for the Williams Syndrome (although E's Mum had a little to do with it too).

E has lit up our lives, it's not easy to explain.  However, you would think that with the appointments, the overnight stays in hospital, the fighting to get access to therapies, the constant repetition of the basic tale of Williams would taint that but it doesn't....  E makes it easy because it is for him and he is a lovely, good natured little boy.

But it's more about me, E's Dad.  E is a little trooper - and never seems to let things get to him - wish i could say the same for me.  There have been times this last year when i have wondered if this is something i can do.  Well, I'm still here - and that's worth celebrating!  Still here, still learning and every milestone makes me want to help him get to the next one.  I have taken to seeking and/or listening to advice.

Anyway, you know all this - but it has given me a great opportunity to read over the blog and think about where I have come from.  After all, that was one of the things i most wanted to use it for.  So here's to the last year and all the learning, but more importantly here is to the next year - and to more learning - but more importantly to just enjoy being with E.  One thing this last year has taught me is that it is easy to watch time go by and miss the doing.  I have seen a lot and studied a lot - but perhaps i need to forget studying and watching and thinking and DO...

Finally, I asked a series of questions at the end of the post last year, and I thought I would revisit the same list to see how they differed:


Have i found peace with ths yet? 2011:No.  2012: No
Do i know anything about the new world i find myself in? 2011: No.  2012: Actually, yes I do.  I'm no expert - but I'm learning, bit by bit.
Am i ready to learn? 2011: Oh yes.  2012: Oh yes.... more than ever - its slow because you need to learn what is needed now - can't put 20 years time in place now.

Not my best post - but it was kind of an interim one because of the day - I have a couple planned that will appear here soon....