Just been told dd (24 mos) needs adenoids/tonsils out asap - experiences please?

[Elibean]

I'm slightly freaked, though glad there's a probable easy solution to her dreadful sleep apnoea. She has a complication (laryngomalacia, aka floppy larynx) so will have to spend a night on HDU afterwards, no going home same day.

She seems so little to have surgery, but I'm sure others have been through it - any tips, experiences, warnings, and reassurance would be v v welcome.

Will watch thread as DS 2.5 is also on the list for Adenoids and grommets.
Much better that they come out in my opinion if it improves the apnoea and they are better rested=better behaved in daylight hours

I had two young tonsils-out kiddies (DD3 was coming up 4 and DS1 was just 4).

DD3 had to have hers out as every single time she had tonsilitis she had seizures and we had to ring 999....she literally would go from ok in the morning to lethargic by lunch and seizing by mid afternoon and blue-lights to hospital.

By rights she should have had hers out at 2.6, but I was pregnant and so said no, so she waited. She also had to stay in, one night before and two nights after, but she has immune-deficiances which complicated things. It was fine, and the nurses were fantastic. I think for me the scariest but was them having to gas her under as she completely freaked out at the needles. I cuddled her close singing to her whil we waited for the gas to take effect, and then had the nurses pulling me onto a bed.....I apparently breathed in the gas too!!

With DS1 he was having sleep issues (apneoa and snoring etc)as his tonsils were so large they touched the entire time. He was kept in for one night after as he wasn;t great (bleeding), but again, the nurses were wonderful and the doctors kept me informed the entire time, making me feel very comforted and confident in them.

I think anything to do with your child and hospitals is going to be scary, despite any reassurances, it is your child and the love you feel means you are scared. Please believe tho that they have your childs best interests at the top of their agenda and will do their utmost to keep her safe and you happy with her care. Tonsil ops are very common, as are adenoids, and yes it is a bit sore for your child, but TBH, no worse than them suffering tonsilitis anyway.

take care of you tho........you need to be there for your child so be kind to yourself.....I make the mistake of going into a spiral of melt-down........NOT good!

Thanks psycho, thats the kind of stuff that helps a lot....can't guarantee no meltdown but will try and remember to take care of myself. dd also has tonsils touching each other, and will be on HDU for the first night post-op, which is part of waht is scaring me I suppose. I spent a week there with her at 4 weeks old, with RSV bronchiolitis - not a fun place to hang out, and definitely no sleep possible (armchairs, no beds for parents).

Norks, good luck, when is your LO's op scheduled for? I agree its good to go ahead and do it, dd wasn't too bad (sleeping through) until virus season started, but the apnoea has got rough recently.

I need to try and find out where we'll be exactly, make sure I will be with her when she comes round, etc. Half glad the op isn't till January (time to find things out) and half wish it was next week (nearly was, but no space).

sounds v scary with your dd3, btw, imagine it was a huge relief having them out...

snap. My DS is also 24months. He has a date for his tonsils and adenoids to come out in Jan. This will be the third date though, cancelled twice as he has not been well enough for op. He has sleep apnea, snores like a warthog, hence wakes very frequently every night. He had a bronchoscopy 3 months ago to rule out the floppy windpipe thing. He suffers with chronic bronchitis and viral wheeze which have led to the cancellations. We too were told he will need HDU care afterwoods. It is a scary prospect. Also sometimes it seems unreal he needs it doing as he has never even had tonsillitis, but then he yawns and I see the huge things and cant wait for them to be gone.

We are on the emergency waiting list, so could be tomorrow I am hoping it will be after christmas, the lastest they have said is end of Jan.
Am desparately trying to keep him well at the moment, not easy mind you and his asthma is bad at the moment

is there no way any of you could ask for a theraputic dose of anti-biotics for your LO's to keep them as well as poss so they have the operation??

They did that with my DD3 as she was getting it all so often. she went on a low dose everyday for the two weeks before her op.

lubbly, stay in touch if you can/want...it is scary, maybe we can reassure each other through it?!

Psycho, not sure antibiotics much point as dd only ever seems to get viruses...not infections, IYSWIM. Am hoping Jan 13 will be good date, because last year the viral infections stopped once school holidays started

Norks, fingers crossed for the 'right 'date for you, what ever that is!

oh dear, not a viable suggestion then.

will keep everything crossed for each of you waiting then.

Maybe not, but useful to know its an option, so thank you!

Lubbly, dd has never had tonsillitis either. Mostly colds, and occasional possible chest infections - with her floppy larynx, its hard to tell as she's so noisy! She did have RSV at 4 weeks old, and was in HDU for a week...ugh...probably why I'm shaken by the prospect of going back there.

Did I post that already? Sorry, dd1 has flu and that plus dd2's adventures have made me brain-dead

My DD had grommets in both ears at age 3.5. She didn't have tonsils out and I know the op and recovery is different because of the infection risk ( wound in the throat) They put a local anaesthetic on the back of their hands so that when they 'knock them out' they can't feel it. My DD sat on my DH lap facing him having a cuddle and she didn't feel or see the needle. She was asleep in a few seconds. The op was about 40mins ( don't know about tonsils/ adenoids) They called me to 'recovery' when she was waking up and she really wasn't as scared or wobbly as I thought she would be. Half an hour later she was like herself again. I know it's different for you as your DD is much younger, my advice would be:
Try to be as calm and matter of fact about it as possible, they really pick up on your stress, use lots of bribes and rewards, try not to talk about it too much with her ( preparing her won't help, she won't understand and she may start to get anxious)
Remember, she knows nothing about hospitals or operations so she doesn't have any opinions or phobias yet, just reassure her on the day that you are there and you won't leave her.
You will all be fine, good luck xxx

Our date is 13th
My DS is also triggered by viral infections. Its a no win situation really as his chest sounds appalling 99% of the time in winter so his snoring etc is much worse. I also have come to the conclusion that the tonsils are partly responsible for his oxygen levels being so low whenever he is admitted for his chest. This means they give him oxygen, then hospital policy means he has to be free of oxygen 24 hrs before going home. I am adamant this is prolonging his stays. DS also had bronchiolitis at about 6 weeks which seemed to start all his problems. Thankfully we are in area of a good childrens hospital who have a great respiratory team with asthma nurses who are fab

lubbly 13th? Us too. How spooky, both bronchiolitis babes, both noisy, both scheduled for same day relief, with any luck! Lets hope neither of us get delayed, and we can cheer each other out of HDU

Thanks for that, honeybunmum, its good to hear experiences.

You're not at sheffield childrens too are you? Would be too freaky! If so, bagsy first on list, starving them for hours is just torture for all involved.

My DD had tonsils and adenoids removed and grommets at 2yrs old. It was absolutely horrendous for us as parents, but she dealt with it really really well. Nursing satff are well used to dealing with upset parents so dont let that botehr you at all. One parent will be allowed with them right up until they are actually under anasthaetic, and you will be tehr eto meet them in the recovery room, so youa re the first person they see. We've had a lot of ops and each time mine have dealt really well with the lack of food in the morning and not even asked for anything as there is so much distraction. Stay upstairs at home in the morning for as long as poss and then dressed and straight in the car!
Take a hefty packed lunch so that they will have something familiar that they like when they come round and fancy a bite to eat. I cant stress how important it is to keep up with the medicine regime they give you (usually antibiotics and at least two types of painkillers - we had 3 I think). If the little ones start to get any pain they will not eat and eating is vital to make the wounds heal and toughen up.
Plenty of hugs and they bounce back surprisingly quickly. We were in overnight and by the evening she managed to eat a meal without any hassle.
Good luck, its not at all pleasant - mainly for you though!

dd2 had ademoids and grommets in, aged 4 I think.

Very straightforward. Just took a little extra care and kindness afterwards. Try not to worry.

Didn't make any difference to her permanent state of blocked-upness though

No, lubblies, we're at C&W in London

And dd is the only 'airway' case on the list, I think he only has one per list - or so he said.

Thanks for all the extra tips and encouragement, it all helps.

Sorry the op didn't help blocked-upness, though, pointydog...do you mean nose or ear blockedness?? dd's is mostly in her throat, so I imagine the tonsil part is crucial - god, I do hope it helps in her case!!

Hope it helps your Dd.
I'm wondering if it will be suggested for ds next time we see resp consultant in jan especially as he has had tonsillitis 3 times since july.
As for having an op Ds has had 2 op's under GA and is due another for a MRI. whilst it is horrible to see them go under Ds seemed to bounce back quickly. One was a few nights on a ward and the other was just day surgery.

Hi Ali, maybe worth asking your consultant about it then?? Hope your ds is ok atm

Thanks, am fairly calm about GA (had them and never had bad experience myself) though am sure I will cry on the day. Its more the night in HDU, and managing pain/infection risk afterwards that I feel clueless about...am glad its not till January, though last night dd had such trouble breathing/sleeping (she's got a cold starting) that I was wishing it were today.

She's getting really bad at night now, and hardly eating - not sure if its the slight cold/cough she's got (extra blocked nose) or the exhaustion from sleep apnoea, but she gets thinner and paler daily and I'm worried.

Any ideas?? I'm taking her to GP tomorrow morning, but know full well there's nothing they can do. Days aren't too bad, but nights are unbelievably stressful this past week - she's drenched in sweat at times from the effort to breathe, gasping all night, coughing, etc. Humidifier, cot head raised, pillow under mattress, Karvol, snufflebabe, medised, what else could I try? The specialist said we were doing it all already....

My dd1 had terrible sleep apnoea and needed grommets too. She was around 3 from memory. They also kept her in overnight despite the fact she was fine( has a cardiac condition)

Her sleep apnoea was terrible - her tonsils were huge - like massive marbles at the back of her throat.

After they were out - she seemed to go ahead on leaps and bounds - she grew very quickly. Not getting enough sleep is not conducive to growth and development. her clarity of speech and hearing made a huge difference and she was no longer tired all the time.

I know it is scary when your children have to have ops - My dd1 had two open heart surgeries at 8 weeks old and that did not stop me being concerned when she went in for her tonsils.

We had one surgery cancelled due to concerns about her health but we were given doses of antibiotics to make her as well as could be prior to surgery.

I know dd1 did not recover well and in fact each time ( she had a second set of grommets in) I have had to go to recovery as she is freaked out by it all. However it was more that she was in pain and did not have the language to tell them as well as her shock as to where she was. They just came and got me and I went do and was able to hold her etc whilst she calmed down.

eidsvold, thanks for that - I'm far less scared about the surgery now because she so very clearly needs it.

In fact, if she could have it done tomorrow, I'd be delighted.

atm, its the level of sleep apnoea, not eating etc which is scaring me. Sounds as though your dd held out in spite of it, which is reassuring - and very good to hear how much better she did afterwards.

Any tips for coping/helping them cope with the apnoea??

strangely dd1's apnoea did not seem that bad but I guess I just wanted them out cause they were huge and it turns out her adenoids were 'substantial' to quote the consultant. I guess she probably had worse apnoea than we had realised - terrible parents that we were. I just found she was incredibly tired all the time would sleep for 3 - 4 hours at midday as well as a good 12 or more at night!!!

Sounds easy to miss then, if she was sleeping like that! dd2's is impossible to miss, she makes so much noise we can hear her in the whole house, and she wakes up gasping and red-cheeked (in cold room) from the effort. You can see her whole rib cage heaving.

I suspect dd's adenoids are 'substantial' too, given the degree of blocked-nose-ishness!