20th Oct - Kells

Yesterday was a bit of an up and down day, one minute it was we were going home the next day, Tuesday, then it was Wednesday then it was Tuesday again, so with the uncertainty it was easier not to tell anybody until we are certain.

All his lines had been removed, all we needed was an ECG and a chest x-ray, and we were sent to x-ray around 6:30pm.

Tuesday morning - 8:30am all clear given to go home, just have to wait till 9am till the travel office back in Belfast Royal is open, by 9:30 we have our flight confirmed by 2:30 - so its into over drive - bags to pack - check out of Ronald McDonald - letters for medicines - fit to fly letters - all falls into place and we leave the Birmingham Childrens Hospital.

Freya really glad to have us home & so am I.

And its nearly 2 years to the day that we got back from Birmingham after his first surgery and I hope this isn't the start of a cycle.

18th Oct - Room 4 Ward 12

Evan has finished his antibiotics so with the 'drug line' removed he's able to get up and about, a wee bit dottery but as usual wanting to run rather than walk.

He has been moved out of the High Dependency Unit, and into Room 4, which is a room closer to the door and closer to home. It's obvious from the daily phone calls that Freya is missing us, as her Granny and Granda keep her busy and entertained, Jenny finds the "mummy I miss you" very difficult to deal with, she says she can hear it in Freya's voice, the thing is I can see it in her face. As I have said before in this blog, at a time like this there is no where else I would be than at the side of Evans hospital bed (a cot no longer) but being away from Freya is something that no Health Authority Planner can truly measure unless they have been through it themselves.

How we could get through this without my mum & dad looking after her back home - I will never know.

Today there was an incident with one of the babies on the ward and its now 11 o'clock at night and the nurses are slowly getting everything back to "normal" and under control, as much as a children's hospital ward is ever normal or under control.

I have heard many complaints about our health service but I will never ceased to be amazed by the dedication of these amazing individuals and oft times I just wish that parents on a ward would just think and act for themselves. Nurses are there to help your child recover and are trained to save your childs life should it be necessary, they are not there as your servant, dogs body or target for abuse, yes you maybe frustrated by the cut backs or how long your child has been waiting to be seen, but believe me so are they as they hear your story every day and witnesses it with their own eyes.

17th Oct - early hours

It's been a difficult night and morning, following Evan's op and putting in the pacemaker, to prevent infection and to ensure his body doesn't reject the box, he is given a very strong antibiotic via IV.

The only problem is that it 'burns daddy' 'my arm daddy' and that's between the sobs and screams its not easy to watch him go through that for 1hour in every 6 for the next 48 hours, but the ends justify the means - just a pity for everyone else on the ward as there is no where to hide from Evan's cries.

16th Oct - Back to theatre

One of the funniest things but still the hardest part of being in Birmingham this time are the phone calls to Freya, the 'I miss you & I love you" are hard, but each call this time starts with 'can I talk to Evan',   and when he gets handed the phone and hears his sisters voice his eyes light up and a grin spreads from ear to ear, there then follows a 5min conversation between the two of them - about what I have no idea.

Evan was meant to go to theatre yesterday to have his pacemaker fitted, but his spot in theatre was taken by an emergency, it was actually taken by the wee boy who had been in the bed opposite the night before who had some real problems. He had been straved and preped for theatre for a few hours when his Surgeon and the Ward Manager (Matron) appeared to tell us, I think they were both taken aback by our reaction - that it was fine and we should get him something to eat. It was just over two years ago that Evan took someone else's place on a theatre list as an emergency - so we fully understood & we fully understood the awful place the parents of that wee boy were.

So today the 16th of October, Evan at 2 1/2 years old got his pacemaker fitted, the surgeon used one of his existing stomach operation scars so he would have another one, and had carefully planned where he was going to put it, as using his words - "the usual spots I use to place a pacemaker have been utilised by my colleagues in other proceedures"

He's back down into the High Dependency Unit rather than Intensive Care for recovery, which I hope is a good sign.

14th Oct

We've been told thaf Evan is to have his pacemaker fitted, and its to be done tomorrow.

Facebook is a strange and emotive medium, its 'You've got Memories' app, is throwing up memories from 2 years ago when we were over here for Evan's first operation.

But tonight it brought up a post from an adjournment debate in the Assembly a year ago tonight, and to be perfectly honest sitting here as the dad of a heart warrior, I'm not sure we are any better off - the plan nearly 3 years ago when children's heart surgery stopped in Belfast was to send our children to English hospitals and as we sit here today our children are mostly flying to England for their operations.

Anyone who has spent the night at the side of a hospital cot or their childs bed will know the low murmur of parents soothing children, nurses reassuring parents and the bleeping of monitors.

And as each parent pulls the curtains around their space retreating into that sense of isolation and perceived safety, they hope for sleep.

Tonight the wee boy in the bed opposite Evan tonight is not in a good place, bleepers are going, Doctors and nurses are working, xrays are ordered and reviewed, the Bed Manager is contacted to see if there is a bed in ICU where he has just come from a few hours ago - all this proves how fickle life is, what a great and often thankless job or NHS does, and what a blessing it is to watcg Evan sleep sound in his bed as the activity beyond our curtain intensifies. 

13th Oct : HDU

Still in HDU Evan back on his feet today and running up and down the ward, even though he is still attached to his pacing box and he is really back on form the nurse who looked after him on his first night obviously struck a cord. He was walking up and down the corridor when he stopped at the nurses station went over to her gave her a hug, called her "my lady" and took her by the hand to the play room, and she couldn't resist that charm.

We should know tomorrow if he's to get a pacemaker, but all the signs are pointing to the fact that it is going in - its just going to be when.

Since Evan was diagnosed prenatal I have been a strong advocate for the retention of children's heart surgery in Belfast and then failing that an all island solution, and I'll still keep fighting for that despite Evan's care pathway being clear that he'll always return to Birmingham for whatever procedure he needs.

It is easy to forget that the review of children's cardiac services started as an England & Wales initiative that spread into Scotland & then Northern Ireland.

As we sit here tonight there are four beds in this part of Ward 12 the High Dependency Unit - and each bed represents each of the four home nations - each glad in a way to be here for the services they provide and the care they give but each equally wanting to be at home with their family.

And listening to the various and many stories, it all goes back to the fact that when we look around you appreciate how fortunate we are, as there are many worse off.

10th Oct 2015 : HDU Ward 12

It's now Saturday but with everything that has happened and probably the lack of sleep it's not easy to work out what day it is, but what makes it obvious that it's a Saturday is the obvious lack of Doctor's about the place.

Evan has been doing remarkably well, he's now off his intravenous morphine and has an oral back up if needed. He has had a 24 hour cardiac tape on, which will go to the Cardiac Investigation's team on Monday and from that they'll assess if he needs a pacemaker or not.

Part of me hopes not as it would involve  another operation but part thinks it would be better to get it done now if he needs it rather than coming back in a few months time.

We called home from the ward today and let Freya speak to Evan, which resulted in him turning his back to the phone and his lip going down, its amazing how close the two of them are, considering she only saw him 6-7 times for the 1st year.

All quite on the ward tonight.

9th October 2015 : PICU & HDU Ward 12

A very restless night in PICU in fact anyone coming within 10foot of the bed got cried at, wee man just sore, grumpy and coming down off the morphine.

One of the ways we always guaged Evans progress was the number of wires or tubes he was connected to.

At 6am that consisted of : 3 canulas, a sensor in his neck, a chest drain, 2 temporary pacing wires and 3 sensors for a heart tape.

By 12 he's back onto Ward 12 and with him due to leave PICU its down to : 2 canulas, 2 temporary pacing wires, 3 sensors for a heart tape and a blood pressure cuff.

Due to Evan's later start at eating in general, he loves to drink and especially Oatly milk as he's lactose intolerant, a litre plus a day no problem plus juice plus water, today post op he's only allowed 500ml of water over 24hrs.

And boy did that bring out the temper, I gave him a small drink of water, he asked for "more milk" to be told "no" saw him ask louder to be told "no" again saw him throw every toy out of his bed, stand up, do a full 360' turn wrapping every lead and tube around himself before sitting down folding his arms and glowering at me.

His nurse looked at him looked at me and said "I never knew what that saying, if looks could kill meant, but now I do!"

But he's had a bit of jelly and is due something to eat later, so we're friends again.

Jenny and I are back into our shifts, I had a chat with Freya earlier who asked a few questions about how Evan was but was more concerned about who was staying in the hospital at night with Evan so he didn't get lonely, as she was sure most of the little babies couldn't talk to him to keep him company as they wouldn't be able to see him out of their cots.

It's the night shift on Ward 12 and Evan's nurse is one of the one's who looked after him 2 years ago when he was last in Birmingham & all is quiet.. so far.

8th October Operation & PICU

So an early start so we can be on the ward for 7am and while Jenny & I tried to tip toe around the room, so as not to wake Evan - within a few minutes there was that wee voice 'hello mummy, hello daddy' and like any house once Evans up everyone's up - and that probably meant the rooms on both sides and accross the hall.

The early start was to enable blood matches to be made as he will need a serious transfusion during the operation, and with the help of 2 doctors a nurse and the both of us we eventually got the 5ml needed, after a lot of screaming and kicking.

And by 9:30am we were with the anestheticist who after putting a toy hippo, a toy octopus, a toy frog and Evan's bear Maurice to sleep, got Evan off to sleep very easily and without alot of fuss.

It was hard saying goodbye to Freya but leaving him sound asleep waiting to go into theater is never easy - but Maurice was with him, Maurice is a green and grey bear that Jenny had knitted for Evan before he was born and has been in every operating theatre with him since so he has seen alot and strange that he never looks for him at any other time but always looks for him in hospital.

The waiting is the hardest time any parent can spend, so we went for breakfast,  went for a walk, went for coffee, got a call that we had a room in Ronald McDonald so we transfered all our stuff, made a few phone calls and it was still only 1pm.

We had been told the operation would take 4-5hrs so the mental maths the watch checking has me at PICU for 1:30pm - 4hrs on the dot - and then the thoughts start -

*did they mean 4 or 5 hours from the operation started?
*do they mean 4 or 5 hours since we left him?
*it was 9:30am so what time is 4 or 5 hours from then, redo the sums a couple of times, no still makes it 1:30pm or 2:30pm.
*and then the main thoughts - where is he, how is he, how can I distract myself so Jenny either doesn't catch on what I'm thinking or upset her - but that never works she knows me too well.

3pm - a call for Evan's parents he's in intensive care and settled - and so he is.

The Surgeon is there - happy with how everything has went and there were no problems, so it's now a waiting game.

Or phone call to Freya, finds she has fallen down at school as she wasn't looking where she was going when she was being chased by a boy, nothing new in that, but she told me his name - including surname which is something new, but I suppose now that she's 5....

A bigger difference from his last op, is now that Evan is a toddler with a far better understanding and a better ability to remove lines and drains and an understandable need to see either mummy or daddy when he does open his eyes for a few minutes, means the shifts have started.

So its 00:05, in PICU in Birmingham Children’s, Evan's settled at the moment,  Northern Ireland have just beaten Greece qualifying for the Euros, Jenny's away back for a few hours sleep - and the Sister  from Ireland who looked after Evan the last time is looking after the child beside him, calling everyone Betty and keeping a check on everything & everyone within a 50ft radius but no sign of the spirit level ;-)

7th October - 1st Day in Birmingham

This has been a very different experience from Evan's last trip to Birmingham, his first was a hospital to hospital transfer, so despite the couple of aborted attempts everything else was done for us, all we had to do was turn up.

This time as Evan is leaving from home it's something very different.

Flights to Birmingham were booked for us, so we flew accross on the 12:30 Flybe out of the City, with people going on their holidays, people travelling on business and there was Evan heading for open heart surgery sitting amongst them - but he had a great time - wee bit embarrassing though when boarding the plane he pointed at a group of ground crew in high-viz vests and shouted "daddy, daddy, minions!"

Flying commercial did have a few differences, letters needed from the Royal to cover all his medications being taken on as hand luggage, again security at Belfast City were great.

One thing that I think could be looked at is the fact that as taxis are used from the airport to the hospital, we like every other family who makes this trip has to bring their own car seat, surely if the same taxi company is used every tume a child seat could be sorted. The taxi driver we had was great, Tom, from his Donald Duck impressions to the fact that he is a cousin of Catriona Ruane and acted as a tour guide pointing out all the points of interest on our journey to the hospital.

When we got to Ward 12, there were the usual rounds of tests/questions/paperwork nothing new to Evan or us, although his 'dislike' of hospitals is becoming more apparent, but blond nurses and doctors seem able to get away with a bit more.

The Surgeon who is doing the operation tomorrow met us and has explained about the thickening and narrowing of the main artery that has resulted in him needing this operation, and is the same surgeon who operated on Evan before, so is familiar with his case and regularly reviews and gets updates from Belfast.

As Evan wasn't to be first on the list, he's here in the hotel room with us for the night, rather than having to stay on the ward.

** but how quickly things change it's 20:30 and we have had a call from the Ward the child who was meant to be first on the list can't make it, can we have Evan on the Ward for 7am? - of course we can - as he has to fast from 3am my alarm is set to stop his feed pump with a second alarm for 6am to get up and ready.

Thats all the practicalities, Freya who started P1 in September is back home with granny, this morning my mum came to pick her up and take her to school for us - so there would be no "scenes" at the school gate and it would be easier on her - and boy am I glad that she did, cause I cried like a big wean when she left the house - because up until then I have been able to make and keep myself busy and I think that was when reality actually hit, of all the unknows - the operation - the travel - the length of time away from Freya..

Its not easy but tomorrow is another day and Evan's second heart operation but ninth operation in total - his surgeon said earlier that he hoped to be able to use the old scar for the incision , but then on reflection he thought there were more than enough to chose from.

2nd October - Royal

Today we met with Evan's Consultant, his left artery has a fibrous growth which is restricting the flow of blood leaving his heart, so his operation will be to remove the tissue and allow a better blood flow.

However they have also detected a concern with his heart rate which although not any worse was always a concern, his heart rate when sleeping drops to an average of only 39 bpm, with an inconsistent rythm, so they are also considering 4 options.

The 1st do the main operation and continue to monitor the rythm.

2nd while he is being operated on fit wires for a pacemaker so one can be fitted in the future.

3rd fit a pace maker

4th do the first operation but leave his chest open while they monitor the rhytm for a few days fit the pace maker if necessary or close it up if not needed.

But as always, Evan's Consultant has an ability to allay concerns and answer questions we didn't even know we wanted to ask.

29th September 2015

Today Tuesday 29th of September.

1- is World Heart Day.
2- its 2 years today since Evan had his first open heart surgery.
3- it was today that we found out completely out of the blue that Evans next heart operation is scheduled for next week, no warning, no lead in, just the call that flights were to be organised. We have been under no illusion that he would need another operation, but it was always somewhere in the future, his 3 monthly check ups were just that, routine and nothing out of the ordinary, until this morning. We have an appointment with Dr Casey on Friday to get a full explanation and I suppose to see what lies ahead. But the thought of the return trip to Birmingham isn't exactly filling us with confidence, no concerns about the operation or the care, just the experience.

Flights, having to take a car seat for the taxi at the other side all the unnecessary complications if only we had children's heart surgery available on this island - within a few hours drive.

A BIG ONE!

I never intended that this blog would keep going after Birmingham, but it has, and one of Evan's nurses said to me once that it would be nice for him to look back on...

So Happy Birthday Son, you're one today!

And it's been an eventful year, there's been highs and there's been lows, there's been smiles and there's been tears, but you're here today a year old, and blessed with a fantastic family around you...

A big sister who loves you enough to play with all your toys just to make sure they are safe for you ;-)

And we've been as equally blessed with the help, support and love we have received from family and friends.

1 year old - 365 days - 47 nights spent at home - 1 major heart operation - 2 bowel operations - 3 central line operations (2 in & 1 out) - 1 chest drain - 1 emergency crash call - 3 weeks in Birmingham - 2 aeroplane flights - 4 different wards in the Royal (mostly Barbour though) - 1 sister - 1 mother - 1 father - 1 family and love that can never be measured x

As one thing you'll learn as you grow up stand by your family as your family will always stand by you.

Its been a long day.

Over the past 2 days there has been some traces of blood in Evan's nappies, this morning's nappy was all blood, and he was in terrible form.

His next nappy was the same, and we were fortunate that Evan's Gastro Consultant was in theater today, so he was on the scene very quickly and with the on call Surgical Consultant, they set up a number of scans and x-rays. The thing I like about these two is not just that they both know Evan, but that neither of the two of them dress anything up. So the possibilities that were explained to us ranged from an ulser, a rupture, an infection, but to be prepared for a twisted bowel, and with Evan's short gut neither of these would be minor.

Things happen at times for a reason, the Consultant Radiographer today was a locum from Great Ormond Street Children's Hospital. So between the 3 consultants they completed x-rays and a contrast study, 3 very dedicated caring professionals.

The concensus is that he has developed quite serious colitis, or inflammation of the bowel, which means he won't require emergency surgery which had been an option, and that hopefully it can be sorted medically, but we won't know the impact on his bowel function until it settles.

He has received a further blood transfusion necessary to balance the volume he has lost, (and he hasn't asked me where it came from, nor have I, nor will I)

Evan came in two weeks ago, as they were concerned he wasn't putting on weight fast enough and we should be in for 3-4 weeks. And today he has had the noro virus, developed colitis, and we don't know when we'll be home again.

6 days in Quarantine

One of the draw backs of being in hospital, is the amount of illness that is around.

Last Saturday Evan was sick a number of times and had a few very 'bad' nappies.

As a precaution and a matter of routine he was put into an isolation ward on Sunday, and tests have confirmed that he has contracted the noro virus, and the kind wee sole that he is he shared, first me then Jenny and then it also spread throughout our family.

Evan at this stage is in his sixth night in an isolation ward, and this is my sixth night on a camp bed bedside him, he's in good form in himself, and is now roughly back up to the same weight he was when he came in here two weeks ago.

Ironically he came in for an operation as he wasn't gaining weight and he has ended up losing more.

During his time here he's had a number of scans and test which we are still awaiting the results of.

Again while Jenny 'does' days and I 'do' nights the support from family and friends is amazing, and Freya is 'holidaying' with granny & granda again.

Central Line in place.

Evan has had his Central Line replaced successfully earlier today and the TPN is now up and running, and shortly the nurse is going to run a 4hr drip which should see his sodium levels returned to normal, which will and can be balanced through his TPN.

But all in all he's in great form, and the staff here have been excellent.

Back to Barbour Ward

We've had Evan home since the start of December, with a weekly visit to the RVH to check his weight.

His weight has been fluctuating up and down over the last few weeks, but it came as a real kick in the stomach on Friday when we were told, it was necessary to replace the "Central Line" and put him back on TPN.

We were told this Monday to be in the Royal for 8am on Tuesday, so an early start to get everything packed and sorted.

And around 11am on Tuesday we were told that there was no opening on the surgical list, and to come back again on Friday, and to add to it when he was weighed he had put on weight since Friday.

Having thought that Evan needing TPN was both behind us and well in front of us, it has been an emotional time, and with the thought of him being back in hospital for another month, will bring a whole raft of other challenges.

Kells

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.

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.

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.