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, 28 February 2009

What a Week!

Gosh its been a funny week, Ethan has had a wheeze for about 3 weeks now it hasnt got any better although he hasnt been unhappy he is on phrophylatic antibiotics (since october to keep bugs away) and he has still caught this.

Its got worse over th last few days where i have had to give him calpol to make him comfortable... it seems to hurt him and he is now coughing.. - he has even been patting his chest now like i do to help him cough !

he is abit clammy and definately off his food we have started giving him half strength milk a couple days ago as he had diorhea and vomited a couple of times his wheeze is stronger and u can feel it when u hold him round his chest - if that makes any sense...sometimes it whistles rather than wheezes!!

Didn't want to go to our GP as they are worse than useless and are like rabbits in the headlights with Ethan!

Anyhow I took him a week ago last Monday and we got some amoxicillin, I rang our Cardiac Liaison Nurse who said yes get some AB's but also that she wants to come and see us about his next operation :-O !! So after a week on Amoxicillin which after a week had made no difference as you could still hear him wheezing across the room.

Just phoned GP again Monday - and he very sensitively told me it must be viral and it doesn't matter whats wrong with his heart if its viral and he is going to drop dead tomorrow there's nothing they could do !! But he said to bring him up which we did and even he said his chest is really really crackly and got given some new antibiotics Erythromycin. Tuesday Night Ethan was so ill we nearly phoned an ambulance, he was screaming for ages, really ill, chest pulling in etc.. but he settled after an hour.

Anyway, we have had this last week, fever, cold sweats, nose bleeds, a very very grumpy boy who isn't sleeping at night and constantly rubbing his head?! oh and yesterday an all over body rash (so after this many weeks I think we can assume its a virus!) and one very anxious tired mum !!

So by Thursday I'd had enough and took him to the Freeman to get checked by the wonderful Doctor Spencer.. they've taken bloods to check his immunity again as his immunogloblin is low and do an all round screen for other bugs.


Friday, 6 February 2009

Life goes on

Its February already !! I cant believe it!

Ethan was in hospital last week after fitting, it was a febrile convulsion they decided but were unable to find an infection so we just had to mark it down to experience. I have always said Im just on this side of sane, this side of hysteria, and it just takes one thing to push me over!

This week I've learnt that no matter how angry at the world you are because your baba has chd - the world continues around you. Well, I knew that already Xmas came and went when Ethan had his first surgery and everyone was celebrating around us but now I **think** I feel more ready to be part of the world.

I feel like Ive been on autopilot for so long that I need to start and try to take time to enjoy our life. And not worry so much, He needs a family that can relax and have fun as much as we all do!

Paddy, Ethans Cardiac Liason Nurse wants to come out this month and assess him... to see if he needs to be booked in for a cardiac catheter.....arrrghhh... might give it a week or so before I ring I think !!!!