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.

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??

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 !!

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.

OH AND ARGHHHHHHHHH AT PADDY THE CLN COMING OUT ON 9TH MARCH !!