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.