It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

Saturday, 21 March 2009

Too many angels

Tonight, I am sad to say there is another chd angel. Life is so unfair. My heart breaks (literally)for her and her parents who very bravely took the decision to withdraw care. Every time I hear of a new angel - whether I happen to know their parents in any way or not I lose a piece of my heart. Because I just cannot come to terms with it.

Since having Ethan, there have been lots of new angels gaining their wings. You know nothing of this world until it hits you smack bang in the face like a car crash.

Heart defects are the NUMBER ONE BIRTH DEFECT. The statistics were 1 in 120 births. That is higher than hyperthyroidism which is what they do the Guthrie test for - that is 1 in 10,000 yet they test EVERY baby for this. Is it too much to ask that we check every baby? I don't think so.

People don't understand the constant worry and battles that comes with our special children, is his colour ok? is his breathing ok? is he puffy? If I wake up before him and I don't hear him babbling - is today going to be the last day that I go in to my sons room to find him alive? who knows but I treasure every moment.

Any belief I had in god is well and truly out of the window, but in its place I have learnt to love and accept and what really matters in life. That and very big bags under my eyes ... LOL

Please, if chd doesn't affect your life - spare a thought for those whose life it does touch.

Rant over. Fly high princess xx

Friday, 20 March 2009

Good News!! No surgery as yet !!

LOL Paddy, Ethan's cardiac nurse came out to visit today. I was a little worried about him first thing as he didn't look to clever - but he perked up after his nap.

Paddy was over the moon with him and his oxygen saturation's were 82% so she feels it will be a few more months before he needs to go in for further surgery!! We had a good catch up it was lovely and he even gave her a kiss before she left.

wooooooooooo hoooooooooooooooo !!

Friday, 6 March 2009

title="FreeDict free online dictionary">FreeDict

If you ever have to ask yourself "Do I need an Ambulance?" You NEED an Ambulance!!

All I can say is it is the really scary and the first time I have actually cried in front of anyone when ethan has been poorly..

He just woke up screaming and unsettled we gave calpol and it didn't work so Dean brought him down he was scalding hot, floppy eyes roling back in his head, and grunting.... so I phoned ward and said Iwas coming in rang a friend to take Josh.

We drove but shouldve phoned an ambulance half way there his breathing got very slow but still grunting and seemed to be stopping or forcing it if that makes any sense...

So I rang the kids ward and said I'm going straight to a&e (it would have meant a further 5 min walk to the ward). We got to A&E after a horrible panicky drive and the woman was asking us whats his name, phone no, GP - I said what part of cardiac and not breathing properly don't u understand! (that's when i started crying) bearing in mind I ran in with him in an open baby grow (too hot!) and he was obviously ill!

Through to resus and all the stuff........... did bloods, exg & chest x-ray they were OK but his oxygen saturations were down to 66% heart rate 170... really bad recession - very bad! so he needed oxygen. They gave him a subutimol inhaler and it seemed to help. So we were taken up to the ward.

He still wasn't right the next day pale mottled and some slight sub and intercostal recession (where the child is working hard to breathe and the chest is pulling in) and a tracheal tug so we were kept in again. and he is much better today so we are home now.

It was like a little reunion, my lovely friend Donna is in with lily and there is another freeman bod in!

NB I did apologise to the receptionist when Ethan was ok, to be fair to her she said she didn't hear my say cardiac, so can only presume it was my tonsillitis lisp(as i called it!) but when she saw his ng tube she realised..and took me seriously.

The last thing I would say for anyone who has a child with chd or other condition is to make sure you know all their baseline/usual information eg heartrate etc... fortunately I do but although I can remember all his medications I couldn't remember his exact dosages.. Think I may write up some index cards with the info on and put them in the change bags.

Oh and the cardiac nurse isn't coming out on Monday now due to all our excitement!