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.

Wednesday, 8 April 2009

No more answers?!

Well surprise surprise we were there from 9am waiting around, Ethan got hot about 11am so had to strip him off and gave him the calpol although it hasn't had much effect.

Had an ECG and it was much longer than usual eg lots more paper? don't know what that means but they said it was ok.

They mentioned endocarditis but said it isn't at this stage, did a quick echo of his valves - don't know why as its a shunt hes had put in and said that was just viral and to see what comes back from Dr Spencer's sample on Friday.

I told him about the blue spells at the beginning and he said nothing then at the end i said so what am i to do if he does it again, he was shocked as if i hadn't told him but said well did he collapse???Well I don't know he went to sleep on my knee and i thought it was weird after only being awake for 45 mins but his breathing was ok..

SO I am resolved to phone an ambulance if it happens again as I'm at my wits end and feel like crying - a virus hasn't effected him like this before so why would it do it now?? his sats are allot lower and his breathing has got slightly worse... but he isn't sweating etc.... his eyes are red the whites of his eyes i mean, so I've been to the gp and got some drops to see if it clears up.

he hasn't been right since Jan and no one seems to be bothered..

they cant talk to each other..and although i seem pretty confident talking to his other professionals i don't seem to know what to say when i see the cardio.


  1. I arrived here ramdomly from UKS. :)

    What an adorable little boy you have and what a hard time you all have. I can understand very slightly, having spent a lot of DS2s younger years in hospital with asthma. It took DH's cousin at the age of 14 so we were very aware of how bad it could be. I can still remember the listening for the breathing and was it normal and was he hot or cold and had he contracted a virus etc. etc.. I don't think it was as hard a time as you are having but it makes me understand a little.

    DS is now a married man but I still remember those times. Wishing you all the very best and an easier future. Gillyp


Leave us a message!!