Sunday, 15 December 2013


After 10 months we have Evan home.

Any parent who has brought a new born home knows how you jump out of bed at the slightest noise, well I don't think I've managed more than 2hrs sleep at a time, but Evan has slept the night through. But thanks to those marvellous nurses on Barbour Ward, he believes it's perfectly normal to be wide awake at 6am.

There's quite a routine of medications and he's still being peg feed 20hrs a day, but he's home.

Freya has taken to him as if he has always been here - which is both good and bad but completely normal!

Our own target was to have him home by Christmas, and we have, to us there could have been no more a perfect gift.

Saturday, 16 November 2013

Belfast - Barbour -Central Line

Tuesday 12th Nov, saw Evan's central line removed, gastro are content that his bowel is absorbing enough so he will no longer require TPN, which is a lot sooner than we ever thought we would get to this stage, it had been suggested at one stage he could be 2 if not 3 before he could be taken off, so to be off at 9months is a major achievement.

TPN is the fluid of concentrated nutrients that he has needed, basically to stay alive, but although it is a life saver it also carries a draw back, as it is concentrated and goes straight into the blood stream there is a risk of kidney failure, and so that is why there was the constant testing and monitoring while he was on it, and why we were so concerned while in Birmingham when he wasn't.

The central line being removed also removes another potential source of infection due to its location, so one less is all good.

There will always be a point where he may need to go back on TPN if he takes growth spurts and his bowel can't keep up.

However as always there's always something with Evan, his central line had been in since birth, with no problems a testimony to the surgeon who put it in and the nurses who worked with it. When it was removed the 'cuff' inside his skin has actually grown into the tissue and rather than another surgery it was agreed to leave it in, so he'll have a very small piece of plastic below the skin in his chest, which is a very very small price for all the potential major problems that he has avoided with his central line.

So only the peg remains and it will be there for a good while.

Friday night was Children in Need, and Evan had a visit from the Children's Heart Beat Trust Patron and Sporting Legend Jackie Fullerton, who's mother was our neighbour in Kells many years ago, and he got himself a tattoo - I've now been challenged to get one of the HeartBeat Trust's heart tattoos, but as you can't give blood for a year after a tattoo I'll give it a miss - that's my story and I'm sticking to it.

Tuesday, 5 November 2013

Belfast - Barbour - numbers

Friday saw us back to Barbour Ward in the Royal, we have left Clarke as the Cardiac team are happy the operation has went well.

And Friday has seen his peg feed reach 30ml per hour a volume that I didn't think we would see this soon and still increasing 1ml a day.

So Evan in figures -

He weighs 8kgs
Uptake should be 100ml per kg = 800ml per day.
Current milk by peg is 31ml for 20hrs = 620ml per day.
The balance currently made up with TPN.

So the plan is increase milk by 1ml per day to replace the TPN.

Tuesday and he is coping well on increasing 1ml per day so now its up to an increase of 1ml every 12hrs, he's currently on 34ml/hr so by Friday he'll hopefully have hit the magic 40ml/hr.

But as we see light at then end of the tunnel there are always those wee reminders, Evan's had a kidney scan today to check it's function, which acts just as a reminder that he only has one, just incase we got too excited about the progress of his feeds.

As before everything was going well but then came -

1- an increase to his milk to 46ml/hr

2- a flu jab

3- an increase to the concentration of his milk

4- an op to have his central line 'removed'

5- a cold doing the rounds

And Evans just not himself, not just as bouncy as usual, but hes still doing well.

Thursday, 31 October 2013

Belfast - lines & tubes

One of the basic and very unscientific ways that I have measured Evan's progress is the number of wires or tubes he had connected.

When he arrived back from Birmingham he had -
*his Central Line
*his peg into his stomach
*2 canuals
*oxygen nasal specs
*heart monitoring leads x4

Over the past few weeks these have gradually decreased to just the Central Line & peg - until this morning when Evan decided he wanted to help by removing his Peg himself, all part of the process that lies ahead, and in Clarke Clinic style it was quickly replaced and the feeds were restarted.

The TPN is back to running over 12 hours but at a reduced rate which is decreasing by 1ml per day and the milk is increasing by 1ml a day - 1ml doesn't sound alot in the scheme of things but is a big step each day for Evan.

Wednesday, 23 October 2013

Belfast - progress

Now that we are back in Belfast, the small steps towards Kells are more noticable but all going the right road -

Tuesday 22nd - saw his peg changed and a blood transfusion.

Wednesday 23rd - oxygen completely off and sats staying in the mid 90's; TPN back to 6hr break where he is disconnected so more freedom; talk today of move to reducing TPN to 12 hrs a day and increasing milk - which means a move towards home.

Thursday 24th - a teething baby as many parents know can be challenging at times, but include teething with increased feeds and reduced TPN times - result runny nappies and oxygen back on a wee bit, and a wee boy who has been 'growling' all day and eventually went to sleep around 7.

Friday 25th - because of the small amount of bowel that Evan has, the target always was being able to reduce the amount of TPN so that it could run over 12hrs. Evan has only "boked" (spell check had difficulty with that) once since his heart operation rather than roughly every 2/3hrs as he had done prior, so the Belfast Gastro team have been able to increase his milk more than they had thought possible and still continue to do so, so small small steps but good steps.

Saturday 26th - Jenny's mum & dad have been able to visit today and are amazed at his progess, its great to get more of the family in to see him, although visiting is restricted. The heart monitor is no off during the day so we are able to take him off the ward although it means circuits of the hospital but it's still good. Oxygen is slowly being reduced and is now at 0.5ltr, and the aim tonight is TPN over 10hrs.

Tuesday, 22 October 2013

Belfast - normality

Now that Evan's back in the Royal our life is slowly returning to normal, well what we have considered normal for the last 8 months.

Up in the morning and get Freya ready to go to her granny & granda, while I head to work and Jenny heads to the hospital for the day, and after work I head across to the hospital and Jenny picks Freya up on the way home, and then when Evan is asleep and settled for the night, I head home with the possibility that Freya isn't in bed yet.

Evan's well settled in Clarke Clinic, he has had his peg changed today without any concerns, standard form is it has to be changed every 3 months, and there is no great panic yet to change the Central Line.

Since his return it has been noted that Evan's hemoglobin has been a bit low, well no wonder after open heart surgery and the number of blood tests he's had in the last few months, so it was decided yesterday that he needed a small transfusion, 120ml, which he received today.

I don't know who donated the blood, if it was a Northern Irish, English or Welsh donor, I do know its been tested and its safe and my son needed it, and as a blood donor myself, when you see first hand the difference donated blood makes in our health service - donate today.

Sunday, 20 October 2013

Belfast - Day 254

The purpose of this blog was to help parents who would have to make the journey to Birmingham or elsewhere by giving them an idea of what challenges we faced and encountered, so my intention was to stop it on our return to the familiarity and support of the Royal Children's. However due to the messages, comments and feedback I have had, and a somewhat shocking revelation that the blog had has had over 4,800 views to date, I have decided to continue it, although no longer on a daily basis but a regular one.

Evan is settling well into Clarke Clinic with a regular stream of visitors from Barbour Ward.

All reviews todate have shown that his heart operation has been a great success, the pocket on his lung is still there but hasn't got any worse.

And his biggest gripe is now his teeth.

The hugs and smiles from Freya on our return were - priceless!

Thursday, 17 October 2013

Day 20 - a different cot.

The same blog - a different cot.

After everything that happened yesterday and Belfast's input, we were told last night that Evan's return to Belfast is scheduled for 10:25 Friday morning, (today) as the pocket of air continues to decrease, but the condition for a return flight  is very clear that it must be a low altitude flight - which will be weather dependent.

So not wanting to preempt anything I didn't mention it until now - now that I am sitting beside Evan's cot in the Royal Victoria Hospital Belfast's Clarke Clinic.

So how do you go from going to theatre at 1 o'clock on a Friday afternoon to instead being 4,800 feet over the Irish Sea.

The answer - involvement from Belfast - central line replacement not needed - consultants review x-rays and transport team sorted - of course weather dependent!

We left Ronald McDonald shortly after 7 this morning and walked out into the fog, so a quick check of the weather on the Internet for both Belfast & Birmingham shows fog lifting at 9 with light showers.

On the ward there is a flourish of paper work and hand over documents, and as soon as Evan is strapped in and ready to go, the fire alarm goes off and procedure dictated the ward goes into shutdown until the all clear is given so 20mins later and we get out the doors, 100yrds down the corridor about to get in the lift and the fire alarm goes again, and we are ushered into theatre to leave the corridors clear, and about 40mins later we are on the move, but when leaving the hospital it's obvious something else is going on traffic at a standstill, large police presence and a couple of ambulances go past with sirens on, but we are going the other way.

We left Birmingham hospital not with the emotional goodbyes that we had when leaving Belfast but with a huge sigh of relief, in the knowledge that we would soon be home, and we would soon see Freya.

I have no idea of times on the return, just that we got here safely.

Within minutes of getting into place in Clarke Clinic a number of friendly and familiar faces from Barbour Ward appear to something akin to a family reunion or Evan's fan club I'm not quite sure, but all very welcome.

It is very reassuring to be back in Northern Ireland and Clarke Clinic.

Birmingham - Day ??

Proverbs 27:1 Do not boast about tomorrow, for you do not know what a day may bring.
Somewhere deep down when I wrote the opening to yesterday's post I knew I would regret it.
While waiting for an update of which of the two travel options are the most likely, the news we got this morning was not one we were expecting. Evan is booked into theatre tomorrow at 1pm, to have his Central Line replaced, it was talked about when we first arrived, it could be done in Belfast, and as I have also just been told that coming home by boat was never really an option, so he's due to have the operation tomorrow, and because of the anaesthetic and the pneumothorax travel won't be possible for a few days, which in Birmingham speak means Monday at the earliest.
In a few previous posts I have referred to the overall coordination that exists here, I've now started to question that, there maybe a few flaws, mostly when you leave PICU, great teams of dedicated individuals but at times communication isn't all that it should be, or possibly that I expect it to be.
It is very much the case now that I feel people are talking to us without telling us anything, but there is one place I know I'll get a straight answer and input - unfortunately & reluctantly I have to ring Belfast - cardiac liaison nurse speaks to cardiac liaison nurse, Evan's Belfast Consultant answers a text from me despite him being scheduled in surgery in Belfast, and things start to happen.
It transpires that Evan was put on the list to have his central line replaced on the 4th of Oct which I do remember, not thinking we would still be here, however the Doctor who requested it hasn't put his name to it, and no one ever thought to follow it up, his cardiac surgeons are consulted and agree that he doesn't need the line replaced urgently, it can be done in Belfast and it shouldn't hold up the chance for Evan to get back home.
So the next step is waiting for our travel to be organised, taking Evan's lung into consideration, an x-ray has been taken and we await the review.

Wednesday, 16 October 2013

Birmingham - Day 18 - Ward

I'm  almost scared to write this post tonight - so far Evan has had a normal day, well a normal day for Evan - 3 doses of 1 type of diuretic, 2 doses of another diuretic, 2 doses of an antibiotic, 3 doses of the medicine that slows down the milk travelling through his stomach, 2 pain relief suppositories, 400ml of his TPN and 118ml of his lipid both through his central line, 360ml of milk through his stomach peg, and his new trick since coming here he has drank about 15ml of water from a sponge on a stick.
Out of all the above probably the most normal one to anybody reading this is drinking water, for us its quite a good sign, from he was born he has been either fed through an NG tube (a line through his nose to his stomach) or his peg (a line straight into his stomach), so there has always been a need to make sure that he remembers how to swallow and that whatever goes into his mouth just doesn't make him choke.
Jenny had been trying him with a few small taste testers before we left Belfast, which had stopped when he had his last chest infection, and the sight of him chewing about a wee finger nail size portion of mashed banana, was worth watching.
The next step now following his successful heart operation, will be for the Gastro team in Belfast to get him to a situation where we can finally have him home for a night. Today Evan will be 8 months and 8 days old, and he has never spent a night anywhere else but in a hospital cot.
He's sound asleep in his starfish pose, and the good news from today his 2 top teeth are through, so he came here with 2 teeth and will go home, soon I hope, with 4!
The purpose of this blog is hopefuly to help parents who will have to make this trip after us, one of the biggest help to us is Ronald McDonald House. its not a hotel nor a hostel, but its as close as a home from home we could imagine, yesterday there was a poster up asking people to vote for the Ronald McDonald in Birmingham in a Lloyds competition by texting "VOTE PDTA" to 61119, if you could can I ask you to do this as it gives them a chance of winning £3,000.00. 

Tuesday, 15 October 2013

Birmingham - Day 16 - Patient patients

This is only posted now we are back in Belfast.
Monday morning's round of consultants was all go, Evan's ok to go back to Belfast, plane tonight, bed arranged in Clarke Clinic in the Royal... need to pack... don't tell anybody back home... just incase... organising milk & PN... the thought of seeing Freya.
Then a Doctor appeared at the end of the cot "we've been a bit naughty, we told you, you were going home, we'll your not, the consultant has reviewed this mornings x-ray and compared it to earlier ones and there maybe a slight increase if fluid on the other lung, so we'll keep you here for a few more days."
I know its the right thing to do medical, and I want the best for my son, but why tell parents you are going home before the decision has really been taken. Jenny was back in Ronald McDonald packing, when I was told.
As I said in the post I was grateful that the surgeon would clear a space on her list should it become necessary, but I pray to God that it won't.
Today just seems like a re-run of last week, Evan fine on the Monday, but the difference is last Monday we didn't know the fluid was increasing on his right lung, and the delay in the x-ray lead to the situation we ended up in, today the increase may be on his left lung.
The cause is a build up of fluid in his body after an operation which is normal, and it is normally treated by diuretics, but as we have told a number of doctors and nurses since arriving here, Evan doesn't react normally to diuretics, he has a short bowel, therefore he can't absorb the full dose, so why were the diuretics changed from IV to Oral? He has only one kidney which has to work harder to remove the fluid, when we tell people this why do they look at us in surprise, it is in his notes?
We were told last week the drain had solved "a problem" but not "the problem" maybe now somebody will look into solving "the problem". I've a few suggestions!

The delays we faced in Belfast were nothing compared to this, the thought and hopes of going home snatched away as uick as they were given! 
He has been sound asleep since about 10:30 tonight, and a good nights sleep will help with what tomorrow may bring, but I have stayed here like most nights, watching him sleep, giving his medicines or changing milk where I can, to ensure he gets as much sleep as possible.
And I may as well sit here with him, as the thought of my wee heart warrior going through a third operation in the last 16 days, doesn't bring sleep that easy.

Monday, 14 October 2013

Birmingham - Day 17 - Ward.

I left Evan fast asleep last night somewhere around 1, and went back to the room knowing full well I wouldn't sleep, I tried reading but kept thinking of the x-ray in the morning, so after putting on a load of washing, I was back on the ward for 3:30 and he has slept through.
Well until now, 6:40, he's just had his x-ray, so we just have to wait...
And it has been a long day since then..
The x-ray came back, the pocket of fluid on his left lung has got smaller, which is brilliant news, but they maybe are possibly thinking of doing a CT Scan just to be sure, but the CT Scan may not show anything additional to the x-ray in fact it might show less, and there maybe around a two day waiting list before it could be done, and they way wait until after the scan before they take the other drain out, and it always seems to be somebody else's decision.
With so many variables, and very little sleep 'Robert' appears back on the ward, and with the support of both the Belfast & Birmingham Cardiac liaison nurses and a call to Birmingham from Evan's Cardiac Consultant at home, things start to fall into place. (if you are a parent coming to Birmingham get to know your liaison nurses they are an invaluable support.)
We now have a plan in place working towards getting him a break in his TPN cycle up until now he has been on a continuous 24hr a day cycle. Blood has been taken to check liver function.
A Cardiac Consultant has taken a sonagram of his heart and all looks good as far as the heart surgery has went.
The Cardiac Surgeon who preformed the life saving operation on my son, and I am under no illusion that is exactly what he and his team did, has come up with three options to get us home, taking Evan's lung situation into consideration -
1- the drain stays in and we fly home.
2- remove the drain monitor the situation for a few days then fly home.
3- remove the drain and explore the option of coming home by boat.
So I am alot more content now that again we know there are more definite plans. He had just left the cot two minutes when they came and removed the drain, and with my limited medical knowledge I think that rules option 1 out ;-)
He has been for another x-ray tonight to make sure removing the drain went ok.
Back home my Dad has been clearing up leaves and branches in the back yard and he turned to Freya and said 'my back's sore' to which came the sympathetic reply 'if your back's sore what do you think mine is!'
Sitting here tonight I'm alot more content than I was 24hrs ago, and thanks for keeping Evan in your thoughts & prayers.

Birmingham - Day 16 - Ward

Monday morning brings rounds of Consultants, surgeons and doctors, every speciality that has been involved in our two weeks here, and recommendations and suggestions are made which will all be coordinated and fall into place later today.
A group of surgeons is called an 'incision', but I can't find the noun for a group of consultants, but I can think of a few!
Evan's been for another chest x-ray, and one sign he's improving, he went to x-ray rather than x-ray coming to him! The pocket of air on his right lung has got a little smaller so decision is to leave the drain in for another couple of days.
Earlier today there was a mention of Belfast (which will be covered in a later post) but this afternoon has brought news that another consultant has reviewed Evan's x-ray and the pocket of fluid on his left lung, has increased, to an extent that they will x-ray him first thing in the morning and compare with previous x-rays, if it has increased, a surgeon has told us she will make room on her list and put in another drain, which is good news, but the best news will be tomorrow that the pocket hasn't got any larger and the diuretics have worked, and I pray its the later.  

Sunday, 13 October 2013

Birmingham - Day 15 - Ward

Its 10:30 Sunday morning, Evan's been out sitting in his chair, I've had a cuddle and now he's asleep. It's hard to believe this time two weeks ago we were all in Belfast, time is a fickle things sometimes it feels as though we have been here a lot longer, especially after talking to Freya and sometimes it feels we have just arrived, when you have to start and explain Evan's conditions to another Doctor.

And I love Jenny's answer to that standard question, "what's wrong with Evan?" - "there's nothing WRONG with Evan although he does have a few medical conditions!"

Again it's Sunday and family visiting day, Evan's head hardly keeping still with all the people in the ward visiting their families, I'm sure he's wondering why he's stuck with just the two of us.

And it's this distance from family and loved ones that makes being here harder each day, we are in the right place for Evan at the minute, but never under estimate the support and love that comes from your family at a time like this even if they aren't physical with you.

Saturday, 12 October 2013

Few tips

1 - Never be afraid to ask, or speak up, remember you are there with your child.
2 - Ronald McDonald House - a great place to stay that does become a home from home
    a) Laundry - tokens for washing machines & dryers available at reception.
    b) Laundry - avoid Mondays for some reason everyone tries to do their washing on a Monday.
    c) Breakfast - there is breakfast in the common room Mon - Fri
    d) Kitchen/Cooking - all utensils are available, you have your own cupboard, section in the fridge, one big freezer so food in freezer needs to be labelled as it is mixed - but they are big fridges & freezers.
    e) Towels are provided, but no face cloths.
    f) Laundry - Colour Catchers or something similar essential - you can throw everything into one wash.
3 - Walking - to walk from Ronald McDonald to the hospital - there is a door in the far left hand corner of the bottom story of the car park, this brings you right into the hospital, you can always leave through it, but it is locked between 8pm - 6am so you can't always get in - some wards may have parents passes which will give you access. If leaving the hospital, on the ground floor find the automatic doors for the "Laboratory, Eye Department" and go to the end.
4 - To eat - while the self catering aspect of Ronald McDonald is brilliant every now and again you need a change, places I would recommend because I liked them, (not an endorsement)
   a) Boston Tea Party, out front door of hospital, turn right, first left and its nearly opposite you to the right - good cup of tea/coffee and good food - (get a loyalty card)
   b) John's Fish Shop, nearly opposite Boston Tea Party, very good fish, large mixed kebab would feed two (reasonably priced).
 c) there are 3 places to eat in the hospital, I wasn't overly impressed and a bit over priced.
5 - Shopping - there are shops in Birmingham, so don't fill your luggage with nappies, wipes etc. you can buy them here -
  a) there is a 24hr NISA out front door of hospital, cross road to police station, turn left, and keep walking on that same footpad as if you are going around the back of the police station.
b) Tesco Express, same side of street as John's Fish shop next the roundabout.
c) if you go across the roundabout and take second road on the left you will come to 'The Bullring' and every shop you will ever need.
d) take a big envelope and keep all your receipts for food in it.

6 - Contacts - get to know the cardiac liason nurse in Belfast, contact details & emergency contact details, get to know the cardiac liason nurse in Birmingham, contact details & emergency contact details. Rooms in Ronald McDonald have direct lines to the wards, get the number from the nurses station.

7 - Safety - when walking around Birmingham either at night or early morning always remember you aren't at home.

Birmingham - Day 14 - Far from home

Evan is in great form first thing this morning, and I was heading back to Ronald McDonald to put our washing into a dryer, when I met another dad from Northern Ireland who we had met earlier in the week.
Their wee girl had been called home at 2am this morning, my heart went out to him when he told me, then he said he had to go to meet the coroner and sort their passports and transport.
The natural way of things, is that no parent should ever have to experience the loss of a child, but to suffer that parting so far away from home and loved ones!
Luke 18:16
"But Jesus called them unto him, and said, Suffer little children to come unto me, and forbid them not: for of such is the kingdom of God."
And tonight I want to take a moment to thank everyone who has kept Evan, Freya, Jenny & me in their prayers over the past days.

Friday, 11 October 2013

Birmingham - Day 7 - Ward

Half of today is already in yesterday's post, as so much of yesterday has run into today!
Evan has managed a couple of hours sleep, bit more like himself still dark around his eyes.
A lack of a pain control management plan seems to be the main factor in last nights proceedings, he's a bit grumpy today but sleeping at last.
All in all a different we boy from last night, he's dropped a bit of weight and without his chubby checks he looks like me again, dear help him.
But some of the junior doctors here, well one in particular, needs a refresher in bedside manners.
She appeared at 11.30pm needing another blood sample as his potassium was high, so I asked her/him what that meant, and was told "its an indication of renal failure and he may need emergency dialias",  but in a few seconds the nurse was back with the result to say the first had been a false reading. When I was with my previous employer when it came to lab results they had a simple procedure : test once, test twice, then report. Its would have saved my blood pressure going through the roof, and if the doctor had checked talking to the parent of a child with one kidney about renal failure isn't a topic for casual conversation.

Birmingham - Day13 - Ward

Evan's had a quiet night, little bit niggly for want of a better word.
Chest drain still remains in, but we have at long last been able to lift him and hold him, and I'm unable to describe just how good that feels, even if was only for a few minutes  so if you're a mum or a dad reading this, make sure you give your little ones a hug every day.
His temperature spiked briefly earlier today so they have added a second anti-biotic just to be sure.
 And not to get too basic about it but as the parent of a child with a "short bowel" the number and size of dirty nappies is a daily question, Evan had a small one around 6 this morning and by 3 still hadn't had another one, so his nurse decided to try a suppository, well to get the student nurse to try a suppository, and Evan gladly complied as the student nurse attempted to place it Evan, gave her quite a handful to contend with, it more ways than one, then turned around and smiled at her.
And shortly after that he went into a deep "starfish" sleep.
Only problem with that sleep earlier is that it is now 11.30pm and he's wide awake, but he's in good form again, temperature back down to normal and he seems content in himself.
Some people may think I over exaggerate Evan's eyes, but the nurse covering him tonight remembers him from a shift she covered on his first night here, which is now nearly two weeks ago, because of his big blue eyes.
Number one child, Freya, I think has blotted her copy book with her mum, Freya switched grandparents tonight for the weekend, and when Jenny phoned to update and talk to her, her only question was "is daddy with you?" the answer was no, so Freya left the phone down. What's the saying about fathers & daughters and mothers and sons?
The intention of this blog was as a guide for parents who may have to follow, and I hope this is read in that light, our experiences won't be the experiences of everyone, so please keep that in mind.
I am thankful that this blog has now been picked up by both the Ballymena Times (one of my local newspapers) and Childrens HeartBeat Trust, and also slightly concerned as now I'll have to be more careful with my spelling.
We have moved positions in the ward, still in the high dependency bit, but four cots are high dependency with two dedicated nurses, the other side is another step down and nearer the door, I hope both literally and physically.
Lights are out Evan's still awake, both legs going so all you can see is the little red glow of the light on his sats probe flying about in the dark.

Thursday, 10 October 2013

Birmingham - Day 12 - Ward

I have finally got up to date with the daily posts of our time in Birmingham, as it is just approaching midnight as I sit, as the blog title describes, at the side of my son's hospital cot.

I managed a longer than usual conversation with Freya earlier on this evening, but she had to rush away as granda was going out the back door and she needed to see where he was going.

Bit of a concern creeping in, but something that is being worked on in the back ground, that is although his heart operation has gone well and he has had his pacing wires removed today, his current lung condition may mean he is not able to fly any time soon, but others with a greater medical knowledge of these things than me are working on that, but it will be a recurring theme in these blogs until we are all back in Northern Ireland, the down side not just for us but its the knowledge that it was generally expected that we would be back home next week, and now somewhere another child's parents have received a call telling them that there is no longer a bed available.

But on the plus side, and that is how Jenny and I have been able to deal with this and that is to always look to the positives, the physio team are drawing up a plan for him, the gastro and nutritional team have been in touch with Belfast and to quote "they are going to try some of their magic" with him and his gut while he's here.

There has been a few steps back, but we are moving forward, slowly and surely

Wednesday, 9 October 2013

Birmingham - Day 11 - Consultation

Consultation by Consultants.

I must admit the paediatric consultants of whatever speciality over here like in Belfast definitely know their stuff, but also have different views on things.

From what has been explained to us Evan's pneumothorax, is basically described as a partial collapse of his right lung, and why Evan's happened is as of yet not quite clear, but is most likely a contribution of a number of factors, including, they are common post surgery, he has had a bit of a chest infection, he was coughing quite hard, and a few others that I no longer remember, but one ting is sure, the action that was taken was the right thing at the right time.

He has now had a number of x-rays and his x-rays since arriving in Birmingham have all been compared, and now the role of a consultant - two consultants of different specialities have requested a lateral x-ray of his chest to establish, where the pockets of air are, if the drain is in the right place and if another drain is necessary, one has the view that this x-ray isn't necessary and won't reveal anything different, and I feel for the nurse and the junior doctor, who have been told to order the x-ray, to cancel the x-ray, to order the x-ray, to cancel the x-ray.

At this stage I can't but help get involved, and the consultant just happens to be passing, and I ask what is going on, by this stage Jenny has left, as I am using what she calls my "Robert Voice" its that voice that I apparently have which is very slow, deliberate, measured, low and somehow manages to convince people that I'm not going to take 'No' as an answer. So the x-ray is done and results come quickly back to show that the drain is in the right place and has removed most of the fluid and air,

One of the consultants who wanted the x-ray explained to us that the drain has solved 'a problem' but not 'the problem', but she will continue to work on that.

The physios have produced a posture chair for Evan so he is able to sit up and look around him even if its just from the floor of an ICU, which did lead to a comment that he looked far too well to be in intensive care, which looking at him now less than 24 hours after the crash team was called is true, as there are little ones in here who will need far, far more than a chest drain and an x-ray.

By early evening we are back on the ward and a follow up visit from the Gasto team, has seen Evan's peg feeds now slowly increasing to where he was while in Belfast, and like his dad he sleeps better on a full stomach. Although it does take a while to get him settled and over to sleep as he's in what one of the nurses has described although light heartedly as cold turkey after coming off the morphine and pain relief he was in while in intensive care, but by 1:30 on Thursday morning he's well over and sleeping like a starfish (legs and arms spread to each corner of his cot) and snoring away.

By the close of today I have a peace of mind, and I don't know why it hasn't been there before, but I am assured that there is a greater degree of communication and joint up working between the different teams.

Birmingham - Day 10 - Crash

I've managed to date to keep this blog up to date daily as the title suggests while sitting at the side of Evan's hospital cot each evening.
Day 10 was very different and its well into day 11 or Wednesday as I think some people call it.
Monday had Evan getting back on form smiling and flirting with nurses, then yesterday went completely hay wire.
From the morning he was really unsettled and breathing heavy, and both his nurse and the cardiac junior doctor were concerned so on the morning ward round a chest x-ray was ordered.
But as the day went on he became more unsettled, greyer, his breathing became more laboured and what really hurt as a parent, its at time like this you want to lift your child and hold them as tight as you can, but due to all the wires and lines that wasn't possible.

To try and easy him the physio had come and gave him a session which did seem to ease him a little, and then he had his x-ray, and a dose of Chlor to see if some sleep would help, but he just keep fighting the sleep and crying.

Jenny was propping him up in the cot on some pillows and I was washing my hands at the sink at the end of his cot when a doctor appeared and just shouted "CRASH", my first thought was "Oh God help some wee soul" when I looked at Jenny and then Jenny looked at me and the penny dropped, she meant Evan!

You can watch a crash call on television all you want, but only someone who has been in the middle of one, knows what seems to be chaos is actually such a well rehearsed, drilled almost military operation. Within seconds and I mean seconds there were doctors, sisters and nurses at the side of Evan's cot, and in an almost daze like state me both moved away.

In a further matter of seconds there was the crash cart, Tech Team, two surgeons and a number of consultants, one of the cardiac consultants quickly took control, quietly said re-suss not needed, and people disappeared as quickly as they had appeared. The consultant again very quietly said pneumothorax transfer to ICU, and just at that point the physio appeared very out of breath, she had been waiting on the x-ray and had saw the shadow on his right lung and had ran to the ward, to find Evan being prepared to be moved, I have since learned that she was unaware of the "Crash call" and had thought someone had viewed the x-ray before her and made the call.

The cardiac liaison nurse was with us, and asked if I was alright probably not the right question to ask me at that particular time...

While Evan was taken up in the lift, the liaison nurse, Jenny & I went up the stairs into ICU, to be shown where he was going to go, were offered tea twice, while we waited, all that was going through my head was "where is, what's keeping them, why isn't he here yet?"

Then the cot appeared, he was transferred to the bed, and roughly within 20mins of the call, Evan had a drain fitted and 75ml of fluid drained from his right lung and was knocked out for the count.

The care and attention he received there was excellent as is in any intensive care unit.

But as a number of family and friends have pointed out nothing has ever been straight forward with Evan, and with his blue eyes and his already cheeky grin I doubt they ever will be.

It's now into Thursday night as I finish this as I still can't quite get my head around what exactly happened.


Monday, 7 October 2013

Birmingham - Day 9 - Ward.

And a busy Monday morning, first visit was from the Gastro team and a very different experience from last week, full explanation of what they have planned and the changes that have been made, and they are going to run a liver function sample as we had been concerned that the TPN was running 24hrs again and there was no break to allow the liver time to rest.
Then the Cardiac Consultant and his team, the LA line will be removed later today, hes happier with Evans heart rhythm but wants to run a 24hr ecg tape which will start this evening, and has requested physio to have a look as well due to the chest infection.
Within the hour and all at once, a team came to change his peg, a team to remove his LA line and the Physio team. Cardiac took precedence so the line was removed and the others will come back later after giving the site time to heal.
But the smiles and the kisses are slowly but surely making a comeback.
Evan has been in great form all day and well into the night, smiling and blowing kisses, and those big eyes and his two tooth smile has the nurses here wrapped around his wee finger the way he does in Belfast.

Sunday, 6 October 2013

Birmingham - Day 8 - Ward

Today, it doesn't seem like we are here a week, but we are, Sunday seems to be family visiting day, as I suppose it is in many hospitals and when you see brothers and sisters, grannies and grandas visiting it does remind you just how far away we are from loved ones.

Jenny managed a longer than usual conversation with Freya today and both sets of grandparents are keeping her busy, and busy enough that if she is missing us she's soon distracted. I don't know how we would have got through this with my mum & dad and Jenny's mum & dad, and the flexibility that grandparents provide.

Evan has had a grumpy grouchy day but all going well, sound asleep now and todays blood results are the first that have not required extra or adjusted fluids. His consultants are due tomorrow for a his follow up so we will see what the plan is.

Friday, 4 October 2013

Birmingham - Day 6 - ICU & Ward

Had to sit this morning and seriously study, just to work out that today was Friday.
Yesterday we met two other families from Northern Ireland, one renal who were rushed over in an emergency with just a few hours notice and the second also cardiac who had the scenario that had often been used when the debate about closing Belfast and moving everything to England was used, the baby needed emergency heart surgery but had been delivered by section, so her mother couldn't come with her, a difficult position but they're here with the same attitude - what ever it takes for my child.
Another big step forward - Evan is back onto theWard, albeit the high dependency section, but a step closer.
Those big eyes open and alert but too much going, hes completely knackered but fighting sleep at every opportunity. Jenny was able to sort his gastronomy connection so one less thing to worry about. Just looking forward to the electrodes going now as there are still alot of wires.
And the one thing I'm missing is just being able to lift him and hold him.
Its 11 o'clock on Friday night and I haven't felt as useless, Evan's in pain and has been sobbing and crying, the pain relief doesn't seem to make a difference, and he has managed about an hours sleep since lunch time so he's completely past himself, and just to add to things the medicine cabinet for this section of the ward is at the bottom of cot as well as the sink and bins and there's a continual flow of nurses back and forward.
1:30 - He's dozed for half an hour, and has woke again, paracetamol hasn't worked, oramorph hasn't worked they have now tried chlor but due to Evans short gut its an unknown how much if any of these he actually absorbs.
He hasn't looked this 'sullen' since the operation, its 3:30 and he is asleep, whether its the drugs or exhaustion I don't know and I don't care. I'm sitting here at the side of his hospital cot, and like any father if there was any means where I could take the pain for him I would, and I'd do it gladly. He managed 45mins before he woke coughing, and breaking my heart with the pain in his eyes that now seems so sunken into his head.
Had got him over to sleep again around 5 although fitful it is sleep, and at 6 a doctor comes to take blood, that could have been taken at any time during the night, and she wants to put in a new cannula, the one already in his foot won't do, the one already in his hand won't do, nor the central line, so Evans awake again, and doesn't even have the energy or will to fight.
I pray to God that our wee heart warrior gets back on form soon.
Cardiac ward round at 8:30, still keeping an eye on his heart rhythm, and the central line team, who are as the doctor describes 'an over subscribed team' have him booked in for the week after next, "so are they coming to Belfast to do it?" I was still able to ask with a smile, and the doctor replies with that all now familiar medical answer "it all depends on Evan."
Jenny has appeared for her 'shift', so I'll go back to McDonald's for a few hours sleep.

Thursday, 3 October 2013

Birmingham - Day 5 - ICU

Strange encounter with Birmingham's Gastro team yesterday, Evan was born with dilated loops of bowel and restrictions which saw him having two bowel ops one at just over 24hrs old and one in May which resulted him having just under 60cm of small intestine, so the reason he was to have his heart operation in Birmingham was due to Birmingham being the Royals referral centre, we could have been in London earlier but we were told Birmingham was the best centre as it could look after both.
The Gastro team had prescribed his PN before even physically assessing him which had caused concern to both Jenny and his ICU nurse and only after some persuasion from the ICU nurse they appeared and asked us 'so what do you want us to do?'
We thought the point of Birmingham was for a second opinion - and their next suggestion was 'did we want to transfer Evan to them for further gastro referrals' this had a simple response - "no we are happy to go back to Belfast."
Aroung 11:30 this morning he has had his chest drains removed, and those big eyes are starting to open as he follows the nurse around his bed, it does help she's blond, as something we learned from the Royal Evan prefers blonds with smiles & blowing kisses.
As he starts to stir both legs are going as usual, in what his nurse has described as a cute little 'jig'.
The cute jig has turned into hard work as neither asleep nor awake Evan is refusing to keep the oxygen mask on, and as he comes off his sedation he is highly irritable. So the doctor has prescribed another dose of meds to calm him back to sleep, so all good.
All was good now x-rays have indicated that Evans Central Line is just about connected to the vein in his neck, as he has grown the line has moved further and further from the position it should be, so it may need to be replaced here. So there maybe another procedure also his gastro peg that he is fed through is different from the one they use here, so a decision will be made tomorrow if it needs replaced as well.

Wednesday, 2 October 2013

Birmingham - day 4 - ICU

In an earlier post I spoke about the worry of having to leave Freya, and at the minute its definitely more of a concern from our side, having just swapped one set of grandparents for the other. I spoke to her on the phone last night, the sum total of the conversation 'Hello Daddy, how Evan is? Ok Bye.'

Evan remains sedated, with a small chest infection detected, so he's due a bit of physio to move the secretion, but again nothing serious, and he is beginning to look more like himself.

Evan has also been signed up to a McLaron F1 sponsored trial, I know hes a bit young yet, but the trial is to work with his monitoring equipment to look for trends in readings and patterns to enable medics to predicted potential problems, but no car.

A few ups and downs today, Evan had discharged more fluid than he has taken in, which has caused an imbalance in his electrolytes which has caused a drop in blood pressure and change to his heart rhythm, but after a few doctors and nurses and his TPN back up, blood pressure is back up and the rhythm is returning slowly.

Tuesday, 1 October 2013

Birmingham - Day 3 - Recovery

A strange day so far, and that feeling of being a spare part that gets in the way.

While in a panic to see him this morning, everything is as was last night, which is a good thing, they weaned him off his morphine during the night, which lead to the nurse who was looking after him describe him as a "bold" boy, well he did manage to dislodge his ventilator while sedated along with a few other lines.

Being at the side of an intensive care bed is alot different from being at the side of a hospital cot, continual monitoring by nurses and doctors, medicine flow rates tweaked here adjusted there, doctor's rounds ICU and Cardiac, scans and x-rays and all the reassurances everything is ok and this is all routine, but sitting or standing, I continually feel to be in the way even though I may not be.

But our Co. Clare Sister is back on duty and is over the ward like a rockets to point out to one of the cardiac doctors completing a scan, "you MUST be new, as anyone else would know to wear an apron while in a bed space" with a glare that would make Medusa proud but with a wink and a smile to Jenny & me.

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.