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 ok.so 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.

Monday 6 April 2009

Not again!!

So we had our outpatients appt this morning with Dr Spencer (respiritory) he was ok, then the next min he was scalding hot and navy blue...

so anyway we rang and asked if we could come early..they did his temp which by this time had come down to 37 with brufen and did his sats and they struggled to get to 70 then managed one 75 in th end we saw dr spencer, he wonders if ethan has intermittent aspiration and wants to do more stuff even tho theyve already done the bronch and barium etc....

they suctioned him and lots of red goo came out - he is obviously very sore..asked the cln to come down and they thought it could have been a plug of mucus but if he does it again to ring her...his sats came up to 77% by this time (they were 86% Friday!!) but they are ok with 77% so not too worried.

he came home and slept.. woke up played for 45 mins then just went really floppy and lay down he went even more navy - will post pic though it doesn't show it great as the flash kept turning him mega white!...

and sleepy his breathing was a little heavy but nothing major or i would've rang an ambulance. he had brufen again at 2.15 and although he cooled down it took him until 4.45 to perk up, was floppy sleepy lay on my knee just really out of it...Rang paddy and she has made an appt for wed morning, so in the meantime what do i do?! I cant ring an ambo and say er would u mind checking Ethan's sats please??