Anyone have experience of severe sleep apnoea due to huge tonsils (kids)?

[Elibean]

I've posted about dd's forthcoming op (January) in the Child section, but thought I'd add a thread here as am getting a bit panicky

dd2 is just 2, has laryngomalacia (floppy larynx) and just been told also has big tonsils that meet in the middle. She's booked in for tonsil and adenoid removal asap, ie mid January.

Problem is, she's now hardly eating (will chew and spit out a fair bit, and drink lots of milk) and although she's tired and cheerful during the day, the nights are totally horrible for her. She gasps and chokes all night long, gets sweaty from the effort of breathing, and now has a slight cold/cough to boot so extra blocked nose and cough to contend with.

We have a humidifier, her cot head is raised, pillow under mattress, we've tried Karvol, Snufflebabe, Medised (which does help to a degree, she relaxed and sleeps through the discomfort better) etc but basically the ENT consultant said there was nothing else we could do.

I pick her up when she cries, but she's almost better lying down than upright when asleep.

Sorry for the long post, I jsut feel so powerless - and worried she'll go downhill too much to cope with the op in 4 weeks' time.

Had dd's pre-op appointment this morning, which went ok (though was to find out she only weighs just over 10kg now, age 2.2).

The nurse did say there was an outside chance, because of her laryngomalacia (and therefore unknown airway status) that they could want to take her off me awake, and sedate her in situ in the operating theatre. I am really hoping they don't ask to do that, because I would have to say no - have seen enough adults traumatized as kids to be very, very against doing this and anyway, not sure I could

Has anyone else been in this situation? We will get to talk to anaesthetist beforehand, obviously, but can see myself worrying about this till Tuesday...

ALso, told 2 weeks quarantine, and to be v v careful of colds during that time...dd1 is 5 and in Reception, and its January: any ideas?!?

bump?

Hiya, we've had Toms appt through and he has to stay in overnight. We haven't had a pre-op one through though, even though the lady who spoke to DP to book the appt said there would be one.

I would feel the same as you if they just took Tom off me. I hope they don't do that with either of us.

Hi Elibean. Glad the pre-op went OK. dd has had several GAs and usually we go into the anaesthetic room and they put her under there (when she was little in my arms or on my knee). She once had to go through to theatre without being asleep - she did have a premed on that occasion and was quite dopey when they wheeled her through. .

I hope it goes OK for you both next week. I think the best way to approach it is to be a firm advocate for your child without being obstructive to what is safe. It's a fine line to tread I find, but they need to offer a very good reason why they want to take her from you awake. Let them know that you are aware of the need for a quick exit once she's asleep - I'm sure they can intubate her very quickly afterwards. Will be thinking of you.

Thanks again, Saggars...(btw, read what that meant on your profile as riddled with curiousity: v interesting, well picked!) thats helpful to know. Hadn't thought of sedation - if they say she has to go in awake, and give me a very very good reason, I will know I have the option of asking for sedation first - they don't expect 2 yr olds to take the oral sort (too bitter) but maybe there's an alternative.

I think its v unlikely, in the light of day; but if they do, I will also attempt to do a good impersonation of a calm, mature, unflappable mother and promise to leave as soon as she closes her eyes if they let me stay...and then attempt to be that. I can be, usually, when it comes to it - its just thinking about it in advance that does me in.

I appreciate your support so much, thanks, and Bexie I will be thinking of you next week (when I may not get to a computer much) too, and hope your pre-op goes ok. Its mostly info giving, if yesterday is anything to go by, and we only had the appointment through a week before the actual date.

Good luck tomorrow Elibean.

How lovely of you to remember, thank you!

Am bricking it slightly, but will do good impersonation of calm person tomorrow. dd's sleep apnoea suddenly worse, suspect she's coming down with cold - but thankfully no temp, so onwards.

I'll let you know how it went, and thanks again - I'm genuinely touched

Only just read all of this.

Any news elibean? We went through all of what you are dealing with when our DS was 2. Was horrid at the time but was totally life-changing. After the op, I felt like a new mum again as she wasn't snoring like some locomotive I kept worrying she wasn't breathing any more!

Sh still barely eats but she's doing fine - she is just diddy and will probably always be that way.

Anyhow, hope it all went well xxx

Thank you aznerak

It went ok, thanks, she slept just before op and was asleep when taken to anaesthetics room....whiff of nitrous oxide in her sleep,a nd she never knew a thing about it. coming round was a different story, unfortunately

They snipped cartilage bands to give her larynx more room, did the bronchoscopy to check her airway, and took out huge tonsils and adenoids...shes' less noisy asleep already!

A night on HDU, lots of pain, but ok...eating a bit, drinking plenty. Then home this morning. Now she has a temp of 38.1, is very hot, restless, and in pain in spite of voltarol and paracetamol...I called the ward, they said up to 38 was ok and normal, but I am worried. Did your LOs have a temp after their ops?

Hi Elibean

Sorry to hear she's not doing so well.

Not what you want to hear but dd was pretty goodafterwards. She got very sleepy and although she wasn't too bad at eating, she wanted to continue her pre-op habits of filling herself up with drink and avoiding food. OVer a year later, that is still the case but a different issue.

In terms of post-op, I was INCREDIBLY regimented about pain relief - I drew up a big chart of exactly what she could take and what time and without fail, she had ibuprofen and paracetomol, even if I had to wake her.

She was not so good 5 days after the op and was very grouchy all day, with a bit of a temp and refusing food. Apparently the scabs start to come off on day 5 so that is when they are at their worst.

She had her op in mid December 07 and by Christmas, she was fully recovered.

Keep a close eye on her and if you are worried at all, call your out of hours GP or the children's ward. You know best, mums usually do, so act on your instincts.

Thinking of you xxx

dd had lots of extra stuff done, really, so with the laryngomalacia on top I didn't really expect her to have a great recovery...but the temp does worry me, combined with her refusal to take her ABs tonight.

I called the ward, and they said up to 38 was ok....and its down again, post Voltarol, to 37.1 so am not going to do anything just now, but will do as you suggest and keep instincts handy as much as poss.

I'm glad your dd did so well, I do think it'll change our lives, and hers, in due course!

And yes, am also v regimented wtin pain relief - am sticking to voltarol every 8 hours and paracetamol every 6 hours, then switch voltarol to nurofen in coupld of days.

its all so scary when they are so little. Our dds tonsils were overlapping in middle and when the consultant removed them, she said they were the largest set of tonsils the hospital had ever removed, in a child or adult!

A year on, sleep is totally different. We still battle over eating but breaking 2.5 years of habits will always be tough. At least now she doesn't stop breathing every night, wake herself (and the rest of us) up with unbelievably loud snoring and generally sleeping peacefully at night.

Fingers crossed you have a calm night and she is feeling a bit better in the morning xx

Gosh, Aznerak, your experience soudns so similar to ours. Amazing what a difference a couple of tonsils and a pair of adenoids can make, eh.

Thanks, she's not too bad right now, sleeping after taking paracetamol, ate a few bits of ham and some dry toast this morning (!) and managed to keep down her antibiotics.

During the night her temp went up again to 38.5...so we took her to GP this morning, chest clear, ears ok, etc. Its either a virus, or a very strong reaction to surgery and meds...but unusually high for that, I think.

GP is trying to talk to ENT, for feedback, and told me to phone HDU...I did, and of course they said 'bring her to A&E to be checked' which I SO do not want to do, given the bugs there, and the fact that her temp stayed down all morning (even when the meds wore off, I took it just before giving the next lot). So am holding off till I speak to GP again mid afternoon, and am feeling guilty anyway in case I'm doing the wrong thing....

I appreciate your support, sorry to rattle on, its just so nice talking to people who've been through it!

dd's temp did go up and down but as I was pumping her full of meds, it never got too out of hand (though I think as she is no 2 I tend to ignore mild temps more than with no. 1 offspring - terrible I know!)

Glad it has stabilised a bit and I agree in avoiding going to A&E unless absolutely vital

Do you have a kids A&E if needs be?

Yes, there is a kids bit at the A&E dept of the hospital dd was at. Its a big London teaching hospital though, and even the kids bit is busy, slow, and full of coughing fevered LOs.

She's asleep now, due her Voltarol, so will talk to GP later and hope for the best!

Thanks again

ps she's also #2, but neither of minne are prone to fevers, so am a bit clueless!

Glad it went OK Elibean and going off to theatre went smoothly. dd always wakes badly from GA so I can empathise with that. I don't think either of mine had a temp after their tonsilectomies but I do remember reading on here recently that some degree of temp was quite normal.

Hope she continues to improve

Thank you Saggars

She's had no temp all day, and her breathing during her 3 hour nap was soo much better than before - we compared it to a recording dh made for the GP: unbelievable. I nearly cried.

Augmentin giving upset tummy and off her milk, and she's running a temp this evening again - so I wonder if she has a virus at the same time as recovery stuff. Just hoping we keep her out of A&E - but the op overall is definitely worth it, everyone was right!

Glad today's been better and that her breathing is already quieter. It is horrid, the week or so post op but SO worth it!

Thinking of you xxx

Thanks, A, fever seems to be down again and she's sleeping well. It does sound as though the pain gets worse before it gets better, so not counting chickens - but we're on our way.

I overheard dh explaining to dd1 that M's tonsils had been 'like having two big lumps of meat stuck in your throat' - never mind the two up her nose she's definitely better off without them. I can't believe how rough the last few months have been: this is horrid for her, and hard work for us, but omg yes - SO worth it.

Elibean, been meaning to post and ask how your DD was. I'm glad the op went well.

We've still not had a pre-op day through. Don't know whether to phone them and ask or not. We'll be there on thursday anyway as have to take Tom to the a&e clinic for them to check his arm (he fell 2 weekends ago and has had 7 xrays, but its not broken). Just what we didn't need right before his op.

Thanks, Bexie - still hard going, but definitely on the mend

Yes, I would phone and ask - then, if you still have trouble getting an answer, you have the back up of your A&E visit, iyswim. Sometimes easier to get information on the phone than in person, too, for some reason!

I'm sorry he hurt his arm, no, not what you need atm (or anytime, of course). Hope its better soon, do keep me posted about the op - there's a couple of ENT threads on the go on the Childrens Health section, if you're interested.

I phoned up and they couldn't believe we hadn't received the letter. Anyway, the pre-op is on tuesday, the day before the op!

Elibean, did you have to bring anything special in with you? Need to start packing a bag each. They did ask us to bring a front opening PJ top and a pair of slippers if we had them. Will take his favourite bear as well. Will have to take some juice and his juice cups methinks.

How is your daughter?

Hi Bexie, glad you phoned and got pre-op sorted! Day before is unusual but it doesn't amount to much, at least dd's didn't. Just info.

I took dd's own pillow (and left it there by mistake!) and her Bear, and a spare Bear in case she vomited on one (she did). I took a flannel and used it to dab cool water around her throat when she was sore, and before the op when she was hot and thirsty but not allowed drink. Change of PJs for him, or couple of short sleeved t-shirts (they get hot and sweaty post-op, and its v hot in there) change of top for you, he may throw up after the op (dd only threw up a bit of mucous, but still got soaked).

I also took a couple of newish books, not expecting she'd be up to playing etc, but she had moments when she really wanted distracting...also had teeny toys in a bag. The best one was a small flashlight, she played doctors with it.

Anything he likes to drink/drink from for after, and a bottle of water and snacks for you, and anything you need to make YOU feel comfortable: dd wouldn't let me out of her sight for 12 hours post-op, helped to have a bag to hand.

Nappies, wipes (they won't provide nappies usually) etc.

I took a small face towel, which we both used.

Spare change for car park/vending machines etc.

Thats all I can think of right now - will add if I remember any more.

Not long now - and FWIW, its made a huge difference to dd's breathing already. She's on the mend now, thanks - its a bit of a long haul, she's still on pain meds, but eating again and sleeping a lot better. Recovery varies, but its true when they say 'keep up pain meds for at least a week' and 'the pain often gets worse before it gets better'. If you need/want any more info on the recovery process, just shout - I'm here, or on Childrens Health section, or CAT me