Saturday, 16 November 2013

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.

Tuesday, 5 November 2013

Belfast - Barbour - numbers

Friday saw us back to Barbour Ward in the Royal, we have left Clarke as the Cardiac team are happy the operation has went well.

And Friday has seen his peg feed reach 30ml per hour a volume that I didn't think we would see this soon and still increasing 1ml a day.

So Evan in figures -

He weighs 8kgs
Uptake should be 100ml per kg = 800ml per day.
Current milk by peg is 31ml for 20hrs = 620ml per day.
The balance currently made up with TPN.

So the plan is increase milk by 1ml per day to replace the TPN.

Tuesday and he is coping well on increasing 1ml per day so now its up to an increase of 1ml every 12hrs, he's currently on 34ml/hr so by Friday he'll hopefully have hit the magic 40ml/hr.

But as we see light at then end of the tunnel there are always those wee reminders, Evan's had a kidney scan today to check it's function, which acts just as a reminder that he only has one, just incase we got too excited about the progress of his feeds.

As before everything was going well but then came -

1- an increase to his milk to 46ml/hr

2- a flu jab

3- an increase to the concentration of his milk

4- an op to have his central line 'removed'

5- a cold doing the rounds

And Evans just not himself, not just as bouncy as usual, but hes still doing well.