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.