Sunday, 22 September 2013

The phone call

From the first scan we were aware that when our son was to be born he was going to be a "Heart Warrior" but what exactly that was going to entail - we had no idea.

The diagnosis was clear for his heart Evan was diagnosed with (AVSD) -  in simple language, 3 chambers instead of 4 and 1 valve instead of 2, the additional complications of dilated loops of bowel and one kidney, seemed almost secondary.

Our little warrior had his first major operation at just over 24hrs old, and a second one a few weeks later, and now the "trials" on his bowel are on-going but nothing dramatic as we can't put too much stress on his heart, so hes still fed through with 50/50 TPN through a central line & Aptimal through a stomach peg.

So why a blog - on Friday at 3:30pm I got the call we had been expecting, "there's an opening in Birmingham next week can you make it", of course there was  no question but of course "yes". We had originally been told to expect middle of September then the start of October and we were probably resolved that it would go back again, but little did we think it would come forward, but it has and so the preparations have begun, and as the whirlwind starts I hope to keep a record that may help others who have to follow in our footsteps.

The dog she's easy to sort, but how to prepare Freya our wee girl who has just turned 3 that mummy and daddy are going away for a few weeks with her baby brother, who has never spent a night at home, has not been easy, but thankfully we are blessed with 2 sets of loving grandparents without who's support I don't know how we would have survived the last year.

The reduction of paediatric cardiac services in Belfast have caused children that would have previously been operated on in Belfast sent to England and Dublin simply because a bureaucrat in Belfast has not yet reversed a decision that suspended some of them despite the service being deemed safe.

My wife Jenny, met the consultant who will be flying with us on Tuesday morning, and if all goes to plan, Evan will have his surgery on Wednesday.

While I said earlier that he had never been home, the care and attention he has received in the RVH Children's Barbour Ward has been second to none, and without sounding clich├ęd, I can hand on heart say that the professionals at all levels who have looked after him are a loving and caring extended family, who not only have looked after our son but supported both of us through the lows.

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