Friday, 7 February 2014


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.

Saturday, 1 February 2014

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.