Monday, 30 September 2013

The Operation - Day 2

The nurses came for Evan just shortly after 1, and took us with him to the preparation room, where the anetheitis took over, and after one injection his big blue eyes started to flutter and he was fast asleep in seconds.

And after a mothers kiss and a fathers 'see you soon' we left him to their care, and we will know in 4/5 hours how things go.

Having moved our suitcases to Ronald McDonald House and walked around for abit and trying to eat, we are now sitting in the parents waiting area of intensive care, and every time a mobile rings or bleeps four fathers all jump.

We have been waiting longer than I had expected, and Jenny can no longer hide her anxiousness, and I'm sure I'm not doing a great job at hiding mine, but the family of a child that has been badly burned and is currently in the theatre, has all the parents hearts going out to them while setting them on edge at the same time, we knew we were coming here today and Evan needed an operation and this was all planned, when they got up this morning the last thing on any of their minds was this and being here.

Shortly after 7 we get the go ahead Evan is out of theater and in intensive care, and it feels like a long walk to his space in ICU.

This is his third major operation, albeit his first heart operation, the sight in front of us is more a bundle of tubes, wires, leads, lines and monitors than our wee boy, and a sight that still brings that initial thought, "is he ok?" Which quickly changes to that wave of emotional relief, the Consultant has confirmed that all went according to plan but not to expect too much for the next couple of days.

And then the phone calls and texts to let everyone, friends & family, know how things have went and to thank them for their prayers and support, but first we need our "agreed lines" because if either family were to be told something different, when they compare notes there would be follow up questions.

Freya's flu spray (no longer a jab) seems to have went well as she came back and devoured a bowl of stew and two yoghurts, and can't understand why my mum won't let her talk to Lena on the phone, Lena happens to be my mums dog, and tomorrow is Play Group, so due to the hectic social calendar of a three year old we haven't been missed too much yet.

Back to recovery, Evan's nurse happens to be from Co. Clare who insists on calling everyone 'Betty', produces a three foot spirit level to ensure that a pump that is giving Evan medicine to slow his heart is level with his heart as he lies in the bed, like every other NHS professional she stays well over an hour after her shift finishes to ensure Evan is alright, and the most amazing thing of all in 15mins she has a great Ballymena accent.

But as he lies there Evan's no longer a wee baby but is stretching and filling out and he has been through more than many another, and in writing this my thoughts are with that other family as its true when they say "no matter how bad things are there is always somebody worse off than you, so count you blessings."

And I thank God because today I have reason to count mine.

Birmingham - Day 2

After a few hours sleep and going through the motions of breakfast, we will know soon if Evan's surgery will be today.
While back home after her big sleep over at grannies where she played with the dogs and fed calves, today she's going to get her flu jabs, so our wee girl will be off form later as well.
One of the unsettling things as a parent and I know it shouldn't be but having been under the care of the same excellent paediatric cardiac consultant since the pre-natal scans its strange to think his heart will be in the hands of someone we will only meet for a few minutes.
And just had another wee uncertainty sorted, after having spent one night in Birmingham's Thistle Hotel where rooms are booked one night at a time, which means packing each morning, we have had confirmation of a room in Ronald McDonald which is a welcome relief and will be ours as long as we need to stay with Evan, on the other hand I keep having an image of the staff in the same uniforms as the restaurant staff.

Evan with his teddy and 'dancing feet'

Sunday, 29 September 2013

Birmingham - Day 1

So we have arrived in Birmingham and as expected 'its different' not bad different nor good different, but being just one week short of spending eight months in the RVH its different. The staff in Birmingham are friendly and efficient but they aren't the staff of Barbour Ward.

And who knew but the plane that is the air ambulance that brought us over was once Kylie Minogue's that she used to go between London and Paris - so there's a story for Evan when he's older.

The reg has been around and Evan is second on tomorrow's list, depending on the availability of an intensive care bed. So again we wait.

So tonight we are checked into the Thistle in Birmingham but we'll see if and when we leave the side of his cot.

And the biggest question will be, will we be able to pay for our food using Ulster Bank or Northern Bank?

Final, final confirmation.

8:50 On the ward bags packed, Evan ready, transport team waiting.

Last call to Birmingham for final, final confirmation, "no bed" a patient was brought in from another hospital and that bed apparently wasn't being kept for Evan according to Birmingham, but the support from the staff here is Barbour Ward is as usual unbelievable, and from some of the nurses faces their frustration and disappointment is greater than ours.

So again we wait - but it is a Sunday morning.

11:45 bed confirmed and transfer team will be here within half an hour.

12:25 left Barbour Ward and by 13:05 aeroplane had left Aldergrove, and we were in an ambulance heading to Birmingham's Children's by 14:40.

Saturday, 28 September 2013

95% sure

Our odds on going to Birmingham have increased in the past 24hrs, just as much as scientists have confirmed that man is responsible for global warming in the past few years.

And we think we're going first thing in the morning... so watch this space.

Friday, 27 September 2013

Thursday, 26 September 2013

The debate - Northern Ireland Assembly - 7th May 2013

Paediatric Cardiac Surgery

Mr Principal Deputy Speaker: The Business Committee has agreed to allow up to one hour and 30 minutes for the debate.  The proposer will have 10 minutes to propose the motion and 10 minutes to make a winding-up speech.  All other Members who wish to speak will have five minutes.
Mr Swann: I beg to move
That this Assembly notes the publication of the preferred option document by the paediatric congenital cardiac services working group and the related Children's Heartbeat Trust report; calls on the Minister of Health, Social Services and Public Safety to reject the recommendation of a Dublin-only service for the future commissioning of regional paediatric cardiac surgery and interventional cardiology; and to select a model which retains primary provision and the ability to operate on emergency admissions in Belfast.


I start today by thanking the Business Committee for allowing today's debate to be changed.  As stated in the draft Order Paper, the debate was to have been on the significant drop in farm incomes.  Although that is an important issue, the Ulster Unionist Party replaced that motion with today's one on the future of paediatric cardiac surgery in Belfast, following the Health and Social Care Board's recommendation to the Minister that Northern Ireland lose that capability and everything move to Dublin.
It is with regret that I have to move the motion.
It is regrettable that the recommendation to remove paediatric cardiac surgery was even considered, never mind recommended.  I hope that the Minister makes it down to the Chamber before I finish my speech.
As I have done previously in the House, I declare an interest as the father of a three-month-old son awaiting cardiac surgery.  I thank Members and staff of the Assembly who continue to ask how Evan is.  I thank them for their stories and support, including Members who have lost a son or a daughter and the usher who has been where I am now.  It is on such occasions that this place transcends party or tribal politics and becomes what it should be: a place that can make a difference to people's lives.  We can become what we should be: politicians who do not just want to make a difference to people's lives but actually do make a difference.
I pay tribute to and thank every member of staff of the children's hospital, without whom Evan would not be with us today: the consultants, the surgeons, the doctors,  the anaesthetists, the nurses, the PICU team and the auxiliaries.  The removal of paediatric cardiac surgery would mean a deskilling of many of these professional groups.  Evan went through what I am glad to say was a successful bowel operation on Thursday.  If the PICU team or the anaesthetist had not had the necessary experience to operate on a child with a cardiac condition, we do not know whether that surgery could have been performed in Belfast, even though it was non-cardiac.
The Minister has received a recommendation from the Health and Social Care Board that would end paediatric cardiac surgery in Belfast, with everything moving to Dublin.  Through the motion, I want to ensure that the Minister knows the feeling of every Member before he makes that final decision, which is his alone.  I call on him to reject the recommendation of the board, accept the concerns listed in the minority report of the Children's Heartbeat Trust and retain paediatric cardiac surgery in Belfast, working in collaboration with Our Lady's Children's Hospital in Dublin, an option also noted in the document on the identification of a preferred option, which I read as meaning that the Minister can make a difference here by doing what is right for Northern Ireland.
Mrs Dobson: I thank the Member for giving way.  Does he agree that all Members should, as we have, visit the mummies and daddies huddled around the cots of their infants at the Royal Belfast Hospital for Sick Children?  If they did so, I do not think that they would be so quick to support moving the service out of Northern Ireland.
Mr Swann: I thank the Member for her intervention.  I also thank the Minister for taking the time last week to come to Clark clinic to visit the parents, children and clinicians there.
Evan William-Robert Swann was born on 8 February at 10.32 am.  He was born with a congenital heart defect — one single wee soul who has already been through more than any parent would want their child to go through.  He is just that: one soul.  He is a son, a brother, a grandson, a nephew, a cousin and a great-grandson.  So you can understand the frustration, anger and hurt when commissioners and John Compton use flippant lines such as "It is a numbers game" and "This affects only a small number of children across Northern Ireland".  Liam Clifford has had two operations and one catheterisation.  Lexie Callender has had two operations.  Odhran Gallagher has had four operations and three catheterisations.  Charlie McCombe has had four operations and one balloon septostomy.  Riley Ann Moss has had four operations.  Shay Smith has had two operations and two catheterisations, one planned and one emergency.  Caiden Dalzell has had two operations.  Katie O'Neill has had two operations.  Nadine McGaffin has had two operations and three catheterisations.  None of their parents sees them only as a number, and there are many, many more.
I labour the point on numbers because they are the sole premise on which the recommendation that Belfast has to close is based.   Belfast does not reach the magic number of 450 surgeries that is dictated by the Safe and Sustainable review.  These standards have not been endorsed by professional organisations such as the Royal College of Surgeons, the Paediatric Intensive Care Society and the British Congenital Cardiac Association.  Minister, in your response, will you please clarify once and for all where that number came from?  I have heard that it came from the recommendation of experts.  How did they come up with that figure?  Who were the initial experts?  Only 15% of hospitals worldwide with paediatric cardiac services perform that number of surgeries, so are the other 85% unsafe?  Have you received evidence that, if that number is not achieved, children will die at surgeons' hands, or do you accept that Belfast is safe?  Today, you should say to the House, as you have done before, that paediatric cardiac surgery in Belfast is safe and dispel the myth.
The board has accepted the Safe and Sustainable numbers for Belfast, and so the recommendation is to close it.  Will the Minister inform the House whether he has had any conversation with his Scottish counterpart, who told the Safe and Sustainable review what it could do with its figures?  Does he know why the Safe and Sustainable review recommended that it was OK for University Hospital Southampton and a hospital in Newcastle upon Tyne to stay open, both of which do fewer than 250 operations?  Minister, if numbers are crucial, why are groups of children being sent elsewhere for surgery that they could safely receive in Belfast? 
Independent external experts who recently reviewed the service concluded in all cases that there was not an undue safety issue.  Despite that, the restrictions on the operations being performed in Belfast has not been removed.  So, it is seen as part of a process of attrition aimed at running down the service to a point of no return, possibly the numbers game that was referred to earlier. 
What a piece of propaganda the preferred options document put forward by the Health and Social Care Board is.  Even its name shows that it is a document that has the sole raison d'être of removing children's heart surgery from Northern Ireland.  This is not a preferred option.  It is not the preferred option of the parents.  It is not the preferred option of the trust.  It is not the preferred option of the children.  And it is not the preferred option of the vast majority of medical experts.  Indeed, in the response to the public consultation, those currently practising in paediatrics, neonatology, paediatric cardiology and other fields stated that their preferred option was to retain provision in Belfast as part of an all-island network.  A central point of having such a network is to ensure that emergency interventions, such as those that take place in Belfast, should continue.  Removing those to Dublin will increase the likelihood of the death of a critically ill child.  Those are the words of Dr Connor Mulholland FRCP FESC.
We were fortunate.  We knew from a prenatal 22-week scan that Evan had a congenital heart defect and a number of other complications.  From speaking to the families I have encountered who have children with a congenital heart defect, I still maintain that we were fortunate.  We knew and were able to plan.  The prenatal and neonatal provisions of any Dublin-only option needs detailed review before the Minister accepts it.  Evan was the example.  He was due to be born on 18 February, and his delivery was planned for 11 February when all the professionals were in place.  However, there is a wee thran thing in him, and he was born on 8 February at 10.32, 10 days early.  All the professionals were on hand because he was born in Belfast. 
I have studied the planned care pathway for Dublin-only, and it is full of potholes, to say the least.  Mothers could be moved a week before delivery, but that would not have worked for us.  I have heard recently of one hour 30 minutes from Belfast to Dublin being achieved.  That is fantastic, but is it repeatable?  Was it the fact that it was done at 10.00 pm on a Sunday with clear roads and everybody at hand?  There was no congestion, and no waiting for the availability of surgeons or PICU beds.
“The safety of children and adults in Northern Ireland relies on continued congenital heart surgery at the Royal Victoria Hospital. I pledge to ensure that this world-class service continues and that children here can avail of the best surgical services in Belfast, Dublin and across centres in Britain. I will vote against any move to remove this surgery from Belfast”
Those are not just my words; they are the words of the Children's Heartbeat Trust pledge, which, to date, has been signed by 87 MLAs, including Ministers.  That pledge is entwined in and substantive to the motion before us today.  It is not up to me to remind other MLAs of their conscience or their individual pledges when they speak and eventually vote on the motion. 
From my opening remarks, there are many more questions that still have to be answered.  I believe that, until the Minister can answer all these questions to his satisfaction that the decision that he makes will not cause the loss of a single soul, he cannot accept the recommendation of the Health and Social Care Board to end paediatric cardiac surgery and interventional cardiology for the entire population of Northern Ireland and our children by removing it from Belfast.

Listen to the whole debate

Wednesday, 25 September 2013

Still being patient.

So day 2.

Text at 8:00 said they needed to check with Birmingham at 10:00.

Text at 10:00 said they needed to check with Birmingham at 11:00.

And somewhere in Northern Ireland is a family going through the same thing - waiting on Evan's bed to come free in Belfast.

11:10 confirmed not going today or tomorrow but will check with Birmingham on Friday to see if there is a bed. But true to form staff in Belfast fantastic and supportive and within minutes both Evans cardiac & gastric consultants were with us at the side of his cot, so as usual Evan smiling and laughing.

But we are blessed as Evan can wait, while for many wee souls another day would be a miracle.

Tuesday, 24 September 2013

Why patients are called patient

So our travel day has arrived, "be on the ward for 9:00 we'll leave the ward 9:30 in Aldergrove at 10:00 take off at 10:30." simple timetable.

After an emotional and quick goodbye to Freya and a foggy drive down the M2, we got to the ward with minutes to spare.

Nurses, consultants, auxiliaries all gathered around for a last kiss or cuddle, transport team arrived, all waiting but now it's 9:45 now it's 10:00.

10:05 And now we have heard that there's no bed for Evan in Birmingham, due to an emergency admission last night, but after their ward round this morning there may be a bed, but remember the fog..... well Aldergrove maybe closing but we'll keep an eye.

Solution - Minister Poots return paediatric cardiac services to Belfast, joint split site with Dublin will work, we can drive through the fog but cancelled beds will be the problem no matter where the 'other' location is, and as I am on record of saying "Northern Ireland children will be the ones to lose out."

Birmingham's ward round is at 10:30 so we wait... not knowing will we be put back... hours... days... weeks... minutes???

10:55 - Birmingham will know in the next half hour.

11:15 - Just been told - cancelled - will get a call at 8:00am in the morning as there MAY BE a bed!

So now to let everyone know - we'll let Evan make the calls.

Monday, 23 September 2013

After 227 Days now its only hours.

We are set to fly to Birmingham tomorrow morning at 10:00 in an Air Ambulance, so have to be on the ward for 9:00 to go to Aldergrove by ambulance.

I've been asked a couple of times "if I was nervous." It's not nerves, it's not relief, the best way to describe it is the feeling you get at the end of a holiday when you just want to get on the plane and go, you can't be bothered with the packing you can't be bothered with the travelling you just want to get on with it.

The packing has started, the organising underway, work sorted as much as it can be sorted, our accommodation reference supplied.

But the big wrench is yet to come when we say goodbye to Freya in the morning, no amount of preparation will have me ready for that.

Sunday, 22 September 2013

Wisdom of Solomon in reverse

One of the more difficult things we have had to cope with is "how as a parent can you be in two places at once" or sometimes three or four?
Solomon's decision was to cut the baby in half, there has been many, many times I wish I could have cut myself in half or more, when wanting to be with Evan in hospital and wanting to spend time with Freya, wanting to help Jenny while trying to keep a job going as well.
And I know if I found it hard, for Jenny it must be ten times worse, but again we managed, with the norm being Jenny in hospital with Evan during the day, while Freya was at granny's and I went to work and called in to see him in the evening, and at weekend's one spent the day at home with Freya while the other visited Evan and then switched.
One of the rare occasions Freya was on the ward to visit Evan 22nd Sept 2013.
At this stage Evan has been in hospital for just over seven and a half months, if somebody had said to me eight months ago I would be going to the Royal every day, and Jenny and I would spend most of the time we spent together asleep, I would have thought it impossible but it is one of the adaptions any and every parent would make to their routine for their children, and now it is the norm.
The hardest part and one where others parents don't realise the difficulty of having a child in hospital long term, is the looks when you leave the ward at night 'imagine leaving that wee baby on its own' or the 'helpful' mother who rushes up to you as soon as you come on the ward in the morning to tell you 'he had a really good night' with that look of 'I stayed here all night with my child', and you think inside 'I wanted to but we have a wee girl at home and are trying to do our best for both'.
I thank the nurse who told us at the start that a bedside vigil for the length of time Evan would be in hospital for, would not make any difference to him and would run us into the ground. Before you think us hard or heartless we have stayed when as a parent you can't leave your child's side, for the times in Intensive Care, for the lows, and for a week in isolation due to a bug he picked up on the ward.
And every nurse and auxiliary who covers an night shift on Barbour Ward knows when the phone rings between 23:15 and 00:30, 'it Evan's Mum/Dad here, how is he?'

The phone call

From the first scan we were aware that when our son was to be born he was going to be a "Heart Warrior" but what exactly that was going to entail - we had no idea.

The diagnosis was clear for his heart Evan was diagnosed with (AVSD) -  in simple language, 3 chambers instead of 4 and 1 valve instead of 2, the additional complications of dilated loops of bowel and one kidney, seemed almost secondary.

Our little warrior had his first major operation at just over 24hrs old, and a second one a few weeks later, and now the "trials" on his bowel are on-going but nothing dramatic as we can't put too much stress on his heart, so hes still fed through with 50/50 TPN through a central line & Aptimal through a stomach peg.

So why a blog - on Friday at 3:30pm I got the call we had been expecting, "there's an opening in Birmingham next week can you make it", of course there was  no question but of course "yes". We had originally been told to expect middle of September then the start of October and we were probably resolved that it would go back again, but little did we think it would come forward, but it has and so the preparations have begun, and as the whirlwind starts I hope to keep a record that may help others who have to follow in our footsteps.

The dog she's easy to sort, but how to prepare Freya our wee girl who has just turned 3 that mummy and daddy are going away for a few weeks with her baby brother, who has never spent a night at home, has not been easy, but thankfully we are blessed with 2 sets of loving grandparents without who's support I don't know how we would have survived the last year.

The reduction of paediatric cardiac services in Belfast have caused children that would have previously been operated on in Belfast sent to England and Dublin simply because a bureaucrat in Belfast has not yet reversed a decision that suspended some of them despite the service being deemed safe.

My wife Jenny, met the consultant who will be flying with us on Tuesday morning, and if all goes to plan, Evan will have his surgery on Wednesday.

While I said earlier that he had never been home, the care and attention he has received in the RVH Children's Barbour Ward has been second to none, and without sounding clichéd, I can hand on heart say that the professionals at all levels who have looked after him are a loving and caring extended family, who not only have looked after our son but supported both of us through the lows.