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Well that was a bumpy ride - Ds2 went in for routine tonsil op and has come out with rare genetic disorder...

21 replies

DottyDot · 12/03/2010 19:26

Aaaarrggghhh...

What a 24 hours it's been. Ds2 went in to have his tonsils out yesterday morning and basically, instead of being in and out of theatre in 30 mins, they came to get me after just over and hour and sat me down in the relatives' room to tell me they couldn't wake him up

Worst nightmare...

Turns out he's got (wait for it) Pseudocholinesterase deficiency...

So his body couldn't get rid of the muscle relaxant part of the anaesthetic so they couldn't wake him up. It's a genetic disorder but we didn't know as neither me or his Dad have ever had any problems with anaesthetics - probably a recessive gene or something

Took 5 hours but eventually we got there.

But bloody hell dp and I have aged about 20 years overnight and now he's got to have further blood tests as it has implications for any anaesthetics he might have in future.

Thank God the hospital staff were utterly fantastic - if I had any money I'd will it to them or something!

Anyway, we're home now and I'm just venting - have never been so scared in my life and somehow have to get it all out so I can get back to being my usual shouty self with ds2!

OP posts:
Are your children’s vaccines up to date?
paulaplumpbottom · 12/03/2010 19:28

OMG!!!!!!!!!!!!!!! Dotty that must have been so awful for you?

Where you able to bring him home?

How is he now?

How are you?

HeadlessLadyH · 12/03/2010 19:29

Yikes. Glad he's ok now though, and at least they are on top of it. Scary for you all.

posieparkerfuckityfuck · 12/03/2010 19:30

OMG, so many people, myself included, never think about the possible risks with a GA.

How is your ds? Scary stuff.

bumpybecky · 12/03/2010 19:31

blimey! never heard of anything like that before, you must have been so worried

hope he'd back to his normal self soon and that you've not gained too many grey hairs!

Skegness · 12/03/2010 19:31

How terrifying dot. So glad he's ok.

PrettyCandles · 12/03/2010 19:34

Frightening!

Hope he's OK now, and that you and your dp manage to regain your composure (chocolate, booze, and cuddles prescribed.

Is it possible to test your other dc to find out whether they are at riskof the same sort of thing happening to them?

JustKeepSwimming · 12/03/2010 19:35

Bloody hell, how scary

hope you are recovering and he is ok soon too.

DottyDot · 12/03/2010 19:37

Hi - he's absolutely fine now - just the usualsore throat - we came home this afternoon which is just brilliant!

Long term he'll need to understand what he's got and me and his Dad will need to get tested to see if we've got the same thing.

He got elevated to Star status on the ward because it's so rare, most of the staff had never come across it - his consultant anaesthetist was amazing - typed us the letter straight away and in doing over 4,000 ops had only ever come across it once before.

This morning he got visited by a ton of different doctors - all very interested in him!

So, no long term damage at all (apart from shredded nerves for me and dp) - he doesn't remember a thing which is how it should be and we just have to be aware that if he ever needs an anaesthetic, he definitely can't have that one again!

OP posts:
HumphreyCobbler · 12/03/2010 19:37

OMG, how terrifying.

I can't even imagine.

So glad you are all home safely now.

DottyDot · 12/03/2010 19:38

Yes - if his Dad carries the gene then ds1 will need to be tested, but if it's me then probably my brother and possibly parents will - not sure about this and when ds2's blood tests come back (from a lab in Leeds...) they'll advise on who needs to get tested.

The worst thing right now is that there's no alcohol in the house - how did that happen??!

OP posts:
hedgepig · 12/03/2010 19:45

have a G&T dotty you deserve it .

DottyDot · 12/03/2010 19:48

How I laughed, when the consultant anaesthetist mentioned he'd "googled it" to check how long ds2 might be asleep for....

You've got to laugh!

OP posts:
alypaly · 12/03/2010 20:26

OMG how worrying for you. I dont know how you coped....but im glad he is ok now. That must have been so traumatic for you both. Best wished for a speedy recovery......open a bottle of champers...reason to celebrate.

CharlieBoo · 13/03/2010 12:55

Oh dear me what a nightmare!!! You poor thing, you must have been frantic!! Hope you both feel better soon xxxx

thumbwitch · 13/03/2010 13:00

God, what a fright! I am so pleased for you that he is ok - I remember the trauma of DS's 1st op at 7w old (hernia repair), especially when they were half an hour late calling us to come and collect him - 5h must have been torture!

At least they found it and you know now - that's an advantage. Presumably he'll have to wear some kind of bracelet thing to warn everyone of the anaesthetic risk, just in case?

Lulumaam · 13/03/2010 13:11

glad to hear he is ok now. nothing like being a medical oddity

hope you are all feeling a bit more relaxed today

DottyDot · 14/03/2010 17:01

Yes, he'll need to wear a bracelet or something when he's older and we've got a letter for his school and GP.

I keep waking up with flashbacks of it all - reminds me of when I had my emergency section and had to keep replaying it in my mind (and talking about it) to get rid of it. Just have to figure out how to talk about it without crying - especially at work tomorrow!

OP posts:
foxinsocks · 14/03/2010 17:07

omg dotty! what a shock, you poor poor thing!

lol at the googling

waitingforbedtime · 14/03/2010 17:09

gosh you must be in shock still. Glad he is home ok though.

AuntieMaggie · 14/03/2010 17:11

OMG - so pleased he is ok now though!

1Littleboy1Bigboy · 15/03/2010 22:02

hi, sux apnoea is a genetic condition - a very rare one - but one that those working in theatre are all VERY aware of. All family members should be tested and that particular muscle relaxant will be avoided in the future for obvious reasons. Unfortunatly unless someone has it in your family one doesn't know they have it until they have an operation that requires this drug - and not all operations do. Adult patients are normally transferred to ITU for at least 24 hours until it has slowly metabolised through the body - there is no reversent to counteract this particular drug but it wears off after only about 3 minutes in "normal" patients. Children naturally metabolize quicker.

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