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.