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.