Our experience with severe tonsilitis (tonsiladenoidectomy)
This all happened a few months back now.
I have now had time to process it all and can actually talk/write about it without getting upset any more.
I felt I should share as I did a few searches on here for stories about the same kind of thing, but never found anything.
A bit of back ground.
DS (3yo) has snored since birth. His Father snores. I've been told I do too (of course I dont! LOL)
over time the snoring has gotten worse, not really noticeable bad but had upped a level or two.
Ds has always been a relatively healthy child, he has been unwell maybe 3 times in his short life so far.
Just before Easter he got a cold, which progressed into a nasty cough.
We went away over Easter, it was when we came back that we noticed his breathing when asleep seemed to be laboured, on further examination he was only mouth breathing and sounding quite rough and seemed to be struggling quite a bit. We kept an eye on it.
A week or so later it got worse, he would actually stop breathing, that scared the crap out of me, I didnt sleep for a few nights, holding him upright so he could breathe better and shaking him awake when he stopped, after the 3rd night I took him to our local GP.
(bear in mind that during the day he was completely normal, running around, being his cheeky self, it was only when he slept that he had problems)
Gp looks in his throat and says, "oh he has enlarged tonsils, its tonsilitis, here's a script for AB's" I said no, take another look, then explained in minute detail what we had been going through the last couple of nights. (I also exaggerated slightly, call it gut instinct, I wanted something done!)
he ummed and aaahed for a bit then said he would call in one of his superiors to have a look.
The next doc that came in was lovely, he checked J out thoroughly, during this we also discovered that over 6 weeks, J had lost 5 kgs, (I had taken him to the GP with a suspected ear infection 6 weeks previously, he had been 20kg and was now only 15kg, I wasn't completely oblivious, but had put his fussiness down to normal toddler behaviour... poor kid couldn't eat ) then started writing a letter while explaining to me that J had extremely large tonsils that were actually touching at some points, by what I had described he was at risk of choking in his sleep, suffering from apnoeic episodes and he said that J was using his accessory muscles to breathe while awake. I was to proceed straight to emergency.
Off we went.
It was a thursday afternoon, they werent that busy, we got a cubicle relatively quickly and waited 2 hours to see a ENT. who had a look and said they would put him on the "urgent" wait list (2 weeks) for a tonsilectomy.
Well that was fine and dandy but what about now? what dod I do while waiting for his op? not sleep incase he chokes???
pretty much.....was told to bring him back in if he started choking, developed a fever or went down hill in any way....
Friday night, didnt sleep much.
Saturday night, friends came round, we had pizza for tea, J actually ate quite a few pieces, went to bed without a fuss and seemed to generally be much better, I checked on him every 15mins.
I had just come back out the loungeroom when J came screaming and choking down the hallway, vomiting up all his tea. I cleaned him and the hall way up and just sat with him again until Jman came to bed.
The next morning he had a 38 degree temp, I told Jman to get up, we were going to emergency again.
I could tell they thought I was just being an overprotective, worried mum, but we got in a cubicle again, then waited for the docs to come, I decided to put J to sleep to see if that would make the nurses see just how serious this was.
He didnt go down easily but he did eventually fall asleep, the nurse came around to do his obs and freaked out, within half an hour he had an oximeter on and they had him prepped for a canula. another half an hour and we were admitted to the paediatric ward.
J's oxygen levels while sleeping were atrocious, at some stages they were down to 63-64 % he would always recover but he scared the bejesus out of all the nurses who looked after him.
They had him hooked up to a drip with 3 different AB's going, saline and pushed a dose of steroids to shrink his tonsils.
Eventually we were given our own special care nurse to sit with J to monitor his breathing, move him when his levels dropped etc.. the nurses were trying to get the ENT on call to come down and do an emergency surgery. Thats how bad they thought it was.
At midnight we were told we were being transferred to the Womens and Childrens Hospital in the city. Flinders just didnt have the resources to deal with us.
The Ambos were fantastic, Jacob was excited to be riding in an ambulance but even more excited that one of the guys gave him his Iphone to watch peppa pig on!
When we arrived, we were informed that we would be going to Paediatric ICU, probably (hopefully) just for 24 hours, to monitor him while they continued to dose him up with steroids.
We were also told that J had what is known as grade 4 tonsils, they were touching in quite a few spots, very red but no visible signs of infection (no pustules or anything)
I was actually able to sleep for the first time in awhile, knowing that there was a doctor and a nurse constantly watching J.
The next morning we were told we were being moved to a ward, J's tonsils werent really responding to the steroids, meaning they thought he had naturally large tonsils.
The AB's were being continued so J still had a drip in.
We ended up staying in the hospital until friday... it was a freaking nightmare. by day 2 J was all better, except for the oxygen. he was having desats every night, we had to have sleep studies and all sorts of test and things to determine just how bad he was...he was sleeping every night with an oxygen mask (not that he tolerated it very well) but during the day he was back to his normal, active 3 yo self, I got in trouble a few times for leaving the ward without signing out... they had a play room but I had a run in with one of the "helpers" who grabbed J around the collar and was quite threatening to him, so I didnt want to go back there!
We spent A LOT of time going up and down the elevators, in the playground etc... erghh...it was awful.
Eventually we were told that J would be booked in for a adenotonsilectemoy, but in 4 weeks time to ensure that all infection was cleared. We also were not allowed to leave until the hospital had organised home oxygen for us to use.
Luckily by friday it was all done, we were given our transport oxygen and we could go home! yay!
we coped ok with the oxygen at home, J continued snoring etc, but we knew he was getting oxygen. I had everything crossed that he wouldnt get sick again, so he could get his op.
Meanwhile my FIL was getting rather vocal about his opinion that J's tnsils were like that because we feed him too much sugar! pfft...
so fast forward 4 weeks, J stayed well, op day came around and off we went. was very straight forward, a bit heartbreaking watching your child get knocked out and then having to walk away, but I coped, he came out of the aneasthetic well, started eating almost straight after and we were discharged the next day.
The Ent who came round to see us while still there, said that all the ENTS were having a look at J tonsils as they hadn't seen any that big in a long time, they were the size of chicken nuggets and larger than adult ones! they were also internally abcessed.
His adenoids were so large that one had completely obstructed hi nostril and the other nearly so.
we went home, so glad to think that it was all over with for now...
2 weeks later, J awoke crying, I went down to my room and he was sitting in his bed (on the floor next to our bed) with a blood nose and blood dripping out of his mouth... I freaked out.
I rang DP who was at a friends place to come home immediately as we might have to go to hospital, he said I was freaking out over nothing, but he was on his way.
I gave J a drink and thought I might just ring the hospital anyway, when J said "mummy I feel sick..." then proceeded to vomit BLOOD EVERYWHERE!!
Seriously freaking out now I rang 000, J continued chucking up blood, (probably 4-5 good heaves) then went all limp on me.
Just as I was giving our address to the ambos, DP turned up, I thanked the ambos and said its ok, we will get there ourselves now. DP walked in and , yeah, lets go! I have never been so scared as that drive to the hospital, trying to keep J awake, not knowing how much blood he had lost...
we were admitted straight away, they did a blood test to see how much blood he had lost, he was borderline for a transfusion, so they just pumped him with a saline drip.
We had to stay for 24 hours, according to the ENT's he was much more likely to have a bleed due to the size of his wounds because of the size of what was removed.. we were sent home with more AB's.
We have just had his follow up appointment last week, but we will need to go back in October to check on his adenoids as they may grow back.
ETA: I forgot to add, J has always been behind in his development, I have always put it down to him being a boy and what not, but ever since his op, he is so much brighter,he sleeps better, his speech is SO MUCH clearer! so many new words and just improving in leaps and bounds all over the place! amazing what oxygen deprivation will do! The specialist I spoke to said that it was quite common to hear that kind of thing, and that it could be entirely possible that his delay in talking, walking etc..could all be put down to oxygen deprivation.
Thanks for reading, if anyone has any questions I am more than happy to answer them
Last edited by STARRYSKY; July 20th, 2012 at 09:30 PM.
my DD1 just did a Sleep Study on Wednesday. she too is a terrible snorer and although she's never had tonsilitis she always has colds/coughs and always sounds congested even when she's not sick! we find out in 2-4weeks if she will need the surgery to remove both her tonsils and adenoids they said if they find anything super worrying we'll hear from them early next week
What an ordeal! So glad he's ok now... you must have been worried sick. Thanks for sharing your story - hopefully it will help some family out there. Give him an extra hug tomorrow (although I'm sure you've done a lot of that!!)
I remember you posting about his tonsils a white back. DS also had the Apnoea etc. his speech and development improved out of sight after surgery. But now he had ongoing ear problems. We were told they are linked, so keep that in mind.
I am glad that he is now improving. The Apnoea is terrifying, so you must be so relieved.
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Our experience with severe tonsilitis (tonsiladenoidectomy)
probably (hopefully) just for 24 hours, to monitor him while they continued to dose him up with steroids.
they had a play room but I had a run in with one of the "helpers" who grabbed J around the collar and was quite threatening to him, so I didnt want to go back there!
they said if they find anything super worrying we'll hear from them early next week
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